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Every day TSA receives urgent questions from parents and teachers asking for help with specific classroom & school situations. In this ASK TSA section we present TSA's answers to real questions sent to us.
"ASK TSA about Education & Education Strategies", features contributions from SUSAN CONNERS, a nationally known presenter on Tourette Syndrome in the Classroom and a career educator for over thirty years (click here for biographical information).
TO SEND TSA YOUR QUESTION PLEASE CLICK HERE.
Previously answered questions (click on each to read full text below):
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What is the Best Intervention for Vocal Tics?
Question: I am a special education teacher. I have a young student on my caseload that has TS. She is very bright and is on the Advanced Diploma track. We are serving her in the general education classroom, but we are having problems. She has primarily Vocal tics. Her tics are very disruptive to the rest of the class as well as disruptive to the teacher which in turn affects the class as well as the student with TS. We know there is a fine line between looking out for a student with TS and the rest of the students. We want whats best for all of our student. We also want this student to be here with us in the general education classroom. We have researched different ways we can accommodate her and always end up at a road block when it comes to VOCAL tics. Our teachers are very interested in helping this girl, but we need help / information on some things we can do. Please email or call me to let me know the best place to seek this advice.
Thanks for your support, and I look forward to hearing from you in the near future.
TSA Answers:
Thank you so much for your e-mail. It is always a bright moment in my day when I receive such a concerned and sensitive letter from a teacher.
Vocal tics are extremely difficult because they are involuntary. This student may be able to suppress them, they may be more or less challenging depending on the day, the task, the amount of stress/anxiety, the time of day, the teacher, handwriting,..... the list goes on.
Generally speaking, symptoms will be more prevelant whenever stress is increased. People are sometimes able to suppress some symptoms, but frequently this requires so much energy and attention that it only can be done for short periods of time. Also, typically when a person is putting so much energy into suppressing, they are not attending to the matter at hand or listening to the teacher.
With vocal tics, the more a student is told not to do them, the more difficult it is to suppress them. It would be similar to telling you not to blink for the next 5 minutes and reminding you every 20 seconds not to blink. Reminding you would only make this even more difficult to accomplish and require more of your attention and energy. Also, when a person with TS knows that vocal tics are more unacceptable in a certain setting, the more likely it is that they'lll occur in that setting. For example, a young person has a vocal 'swearing tic', and thinks he must COMPLETELY SUPPRESS it in church. In church, he has even MORE DIFFICULTY suppressing his tic, because he's given himself added pressure. The added pressure can give rise to increased tics, and more difficulty suppressing the vocal tic.
Additionally, many students have obsessive compulsive issues that can result in anxiety/stress and increase symptoms. You may want to notice when and where the vocal tics occur; sometimes a quick walk to the water fountain can assist in reducing the need to tic; sensory diets determined by a qualified OT can sometimes work; asking the student for suggestions can sometimes be helpful; testing in a private location can be helpful; the appropriate intervention really depends on the specific situation and trial and error.
The most effective plan is 'planned ignorance' from everyone and role modeled by the teacher. You may want to show the students the video "I Have TS, but TS doesn't Have Me" (available on the tsa-usa.org website). You may want to have someone come to your school who has TS who can do an in-service. This is also a very positive experience for the student with TS to see someone who is successful. Letting students know what is going on can be very helpful because it allows for greater acceptance and tolerance on their part (which is always a good idea). This acceptance reduces stress, which results in less symptoms and less tics.
Gifts to help 10 year old nephew with Tourette Syndrome
Question:
I have a nephew who has been diagnosed with Tourette's. He is 10 years old. My question is: What can I give him for birthdays and Christmas gifts that could be beneficial/helpful for either learning or de-stressing? Thanks
TSA answers: What a nice aunt!! I have a few suggestions. On the homepage of this TSA website (tsa-usa.org), you can enroll him in a subscription to the TSA kid's newsletter "That Darn Tic". Kids really enjoy it and many kids even contribute to it. Also in our online store, is our awareness wristband/bracelet which sell for a dollar each. They are inscribed with the word "inspire". There are also two very good novels for kids your nephew's age, both in that same section (For Teens and Younger) of our online store. One is entitled "Quit IT"--that one is about a young girl with TS. The other one is entitled "A Test of Will" by Diane Schrader-Smith. You'll find that in the online store also, or get it at most bookstores. That one is about an 11 year old boy with TS. There is also a short "comic-book-like" series for sale in the online store. They are the SIMON series. The first one is "Simon's Special Sneeze Test".
I hope these suggestions are helpful. You may also want to contact your local TSA chapter and see if they have a kid's group or a overnight recreation program for children with TS. On this site, click on the Local and International button on the side bar. That will lead you to the chapter in your area.
Dealing with loud vocal tics in the classroom
Question: I found your address/website while performing a search on Tourette's. I am a learning consultant in NJ who is working with a youngster who has this syndrome. He is medicated but loud vocal tics are becoming difficult to deal with and disrupting to others in the class. Any suggestions or recommendations you could offer which would help us help this student would be welcomed. Thank you.
TSA answers:
Loud vocal tics can be very difficult to deal with in a classroom setting. I find that the most effective way to deal with this is first and foremost through peer education. Once classmates understand TS and why the student is doing what he/she is doing, the tics usually calm down naturally because stress exacerbates tics. The stress this child is experiencing due to embarrassment, fear of disrupting the class, etc. will cause the tic to be worse. Giving the child frequent breaks out of the classroom to release tics in a more private, less embarrassing environment is also very helpful. I always send kids with these disorders on errands or give them a special pass to leave the room for a short break whenever they need to. I would not recommend suggesting to the child that he needs to leave the room because that in itself can be stressful. Errands are great ways to let kids leave without them feeling like they're are not wanted in the classroom. Providing a safe private place for the child to go when tics are particularly difficult can also help tremendously, e.g. the nurse's office, the counselor's office, etc.
Once the other kids understand what TS is, the noises just become just like was to shout out 5 or 6 times a class period, "I've got a chicken in my pants". Once everyone understood, no one paid any more attention to it than when someone sneezed, blew their nose, droppeda book, sharpened their pencil, or any of the other hundreds of interruptions that we have in our classroom.
I strongly suggest that you visit the TSA website (http://tsa-usa.org). Go to the education section where you will find some very good articles and brochures on dealing with TS in the classroom. I especially recommend a peer inservice model entitled "Educating Classmates about TS", available through our online store (Catalog Item E-122, or downloadable item E-122DD), and an article entitled "Specific Classroom Strategies for Working with Students with TS in the Classroom" (catalog item #E-115b, or downloadable item #E-115bDD). These can be very helpful.
I hope this helps. I also ask that you keep in mind that as disturbing as the noises are to the classroom, imagine the life this child must lead every day of his life with such a difficult and misunderstood disorder. Your acceptance of this child will model to the other students how to also treat him. School may become his only safe place away from home.
Question: My son qualified for a 504 plan based on his severe asthma, not TS, in a meeting yesterday. He missed 40+ days of school due to illness this year. The problem I have is that his IQ is 135 (top 1%) so the people coming to his 504 planning meeting don't feel he needs special accommodations. He is too bright. He struggles to keep his grades up and it causes him a huge amount of stress. I'm afraid they are going to try to give him a medical plan only, and not make any academic accommodations for his frequent and severe illnesses. I'm looking for streamlined workload, additional time to do makeup work, and help organizing work, especially after an illness. Can you help or can you refer me to someone who can?
TSA answers: IQ has nothing to do with qualifying for a 504 plan. He qualifies because he has a disability (TS and asthma) which interferes with his ability to access his education. On the (this) TSA website there are some very useful brochures that I recommend that you read and provide to the school. I have listed them below. Also, if you let me know where you are from, I will try to locate an TSA advocate in your area who could assist you in obtaining appropriate services for your son.
Suggested brochures (free):
Getting Help at School...Where Do I Begin?
The ABC's of Special Education
Available for a nominal charge from the TSA online store:
Learning Problems and the Student with TS Catalog item #E-116 (download item #E-116DD)
Specific Classroom Strategies and Techniques for Students with Tourette Syndrome Catalog item #E-115b (download item #E-115bDD)
The IEP for Students with Tourette Syndrome (A Parent's Handbook) Catalog item #E-123 (download item #E-123DD)
The IEP for Students with Tourette Syndrome (An Educator's Handbook) Catalog item #E-124 (download item #E-124DD)
Introduction to Educational Advocacy-The Basic Tools Catalog item #E-121 (download item #E-121DD).
I hope this helps. We look forward to hearing from you.
Should we tell the school our child’s TS diagnosis?
Question #1:
My son is 5 years old and recently was diagnosed with TS. At this time he does not have any associated disorders. He is a great child - happy, kind, friendly, and well behaved. His tics have been relatively mild and not noticed outside of the home. He attends a private Kindergarten this year where he is doing fine. In 9/04 he will be going to the local public school for first grade. This is a substantially larger building and school will be more "real". By this I mean more structure, homework, expectations, etc. I am unsure if I should let the school know of the TS Dx. Should I mention it when I register him or wait until I see how he does in school. Is it really necessary to say anything if he has no other problems in school? By the way, he is verbal and bright and gets along well with other children. I don't want to stigmatize him if there are no major issues. Thank you for your assistance.
TSA answers:
This is a question that I hear a lot - to tell or not to tell. It¹s wonderful to hear that your son is doing so well and having no difficulties in school. That is certainly a plus. However, I¹m sure that you would never want anyone to say something to him about his tics, certainly not to punish him for them. This unfortunately happens when teachers are not educated about TS. It is my belief that teachers should be informed about the diagnosis and the symptoms they are likely to see in the classroom. They can certainly be told that the symptoms are very mild at the moment and that no attention should be drawn to them.
This is the best preventive medicine. It also opens up the lines of communication so that if the tics do worsen or another problem does occur, the teacher will look at it in light of the TS and not immediately assume it is a behavior issue. You can encourage the teacher to contact you if a problem does occur or simply if she has a question or concern.
It is my belief that education and open communication is always the best.
Question #2:
MY DAUGHTER, EIGHT YEARS OLD, RECENTLY HAS BEEN DIAGNOSED WITH TOURETTE SYNDROME. WE ARE STRUGGLING VERY HARD WHETHER OR NOT TO TELL HER TEACHER. IF WE DO TELL HER TEACHER, WILL THE SCHOOL AUTOMATICALLY PUT HER IN A SPECIAL EDUCATION CLASS?
TSA answers: This is a question that I hear frequently from the parents of newly diagnosed children. I¹ll answer it from two points of view, that of a person with TS who remained undiagnosed until the age of 36 and that of a classroom teacher for 33 years:
As an adult with TS, I spent countless hours of my younger days in school worrying about being embarrassed, punished by the teachers, imitated and made fun of by other students because of symptoms that I could neither understand nor control. I struggled trying to suppress tics and obsessions, trying to write neatly and take notes, complete assignments and tests knowing that no one knew why I was struggling. My life would have been incredibly easier had my teachers known what I had. They could have helped me tell the other students, they could have made modifications for me when work was so difficult, they could have simply understood. I did not have that advantage because no one knew anything about TS including myself. From a teacher¹s perspective, it is vitally important that teachers know what struggles kids in their class are facing.
As a teacher I would feel terrible about calling attention to or punishing a child for symptoms of a disorder that I was never informed about. The vast majority of teachers are caring, concerned professionals. They can only deal with what they know about. As a parent, I would never forgive myself if my child with TS were being reprimanded or teased for his/her symptoms because I did not inform the teachers. Teachers need to know and they need to be provided with all the literature that TSA has to offer to help them understand this disorder. Then and only then can they be equipped to deal with this disorder in their classroom and to make necessary modifications to help that child. Your child would only be evaluated and tested for special education placement if they were experiencing behavioral or academic difficulties in school and/or if you requested it. It is true that many children with TS experience educational difficulties. This could be for a variety of reasons. It could be the interference of tics and obsessions with classroom performance. It could be because of ADHD symptoms that are making it difficult for the child to pay attention, keep organized and get the work done. Or it could be because of a learning disability. There are many options in a school setting for dealing with these problems. I encourage you to go to the Newly Diagnosed section of this web site for much more information on this topic. Most importantly, I encourage you to educate the professionals working with your child so that they can do the best job that they have been trained to do.
Child Punished For Tics in School
Question:
My nine year old has a dual diagnosis of Tourette's and Asperger's Syndromes. Up until now his tics, both motor and vocal, have been mild and have not interfered with his schooling. Over the past couple of weeks, he has developed a very high-pitched screeching tic. They are very disruptive to the class. The school's response has been to ask him to stop or leave the room. Both of these things are very difficult for him and have led to escalating frustration, anger and increases in the tics. His tics are very mild at home.
Is it reasonable for the school to ask a child with these problems to "quit it" or leave? Is it reasonable to ask the school to put up with the noise level and distraction? I understand the disruption, but I have a gut feeling that he is being, in essence, punished unfairly and their responses are discriminatory. We are going to give clonidine a try.
Any perspective on this difficult situation would be appreciated.
TSA answers: Tics should NEVER be a reason to punish or remove a child from class. This is a part of his disability and he is being punished for this which is, in essence, a violation his civil rights. Please let us know where you are from nd we will hook you up with a chapter in your area. The school desperately needs in servicing on TS ASAP.
Question: I have 2 sons with TS, ADHD, and OCD. One of my sons has an IEP under the IDEA. The other son is under 504. Recently the school called me and felt my son with the 504 didn't need it because his grades are so good. I informed them I wanted to keep it because he has good grades based on his OCD. He is only 13 and works on his homework a minimum of 4 hours a night. I have 2 questions: Can they remove his 504? And should I try to get him placed with an IEP under IDEA. I have read all your articles and feel they are very helpful. We live in a remote area of our state and have no TSA chapter here. The school has been very supportive of my kids with their TS and associated disorders. Thank you for your help.
TSA answers: Once a 504 plan is in place, it indicates that the school has acknowledged that the child in question has a disability. That does not change. The disability that they acknowledged is still there. I also appears that they have not included in the plan accommodations for modified homework so that your son will not have to spend 4 hours each night on it. The fact that his grades are good indicates that the plan is working. To remove the plan would probably mean that his grades would drop. He has a disability that interferes with his school performance. The plan should stay in place with accommodations added to deal with his OCD symptoms. Both 504 plans and IEP's for children with TS need to be frequently reviewed because of the constant waxing and waning of symptoms. They also must take into consideration the toll that the disorder is taking on the child’social/emotional well-being even in the home environment. You may want to consider an IEP for that son, but unless you can prove that he needs the direct services of a special education teacher, you will probably not be successful. Good luck.
Extreme and Inappropriate Punishment
Question:
My grandson is 12 years old and has been diagnosed with Tourettes, ADHD and OCD. He was in regular school until this year. Now he is in a program where they are allowed to send him to jail for 72 hour holds, to teach him to behave better. He has been in jail 4 times so far. The teachers say his problems are learned behaviors and he can stop it if he wants to, even some of his tics. Nothing his mother or I tell these people makes any difference to their thinking. My question is where would we go to get some advocacy help? We have no insurance and are at the mercy of the community programs.
TSA answers:
You are in desperate need of an advocate to work with you and the school. Punishing a child, and in jail no less, for symptoms of a medical disorder violates the child’s civil rights under the ADA (Americans with Disabilities Act). It is also abominable!!! I need to know as soon as possible where you are located so that we can get you some immediate assistance. Please e-mail back with you location and we will do what we can asap.
Shorten School Days as an Accommodation
Question:
My son is 18 years old. He was diagnosed at age 10. We have changed medications many times over the years according to what was going on with his Tourettes, OCD, and ADD. He is presently taking Haldol .5 mg at HS and as of yesterday Prozac 20 mg daily. The problem that we are facing is that he is in 12th grade. He has 4 classes to complete in order to finish in January. He is in all regular classes but is failing. He has missed one day of school per week and is often at the nurse. He doesn't feel well often and is tired often. The school does block scheduling with each class lasting 85 minutes. According to my son that is too long to sit and do the work. I have to attend a meeting next Wednesday to discuss what behavior modifications can be done. They feel this is a behavior problem and don't really understand TS or OCD. I am hearing from the nurse that she heard they are looking at alternative school or home schooling. I don't think either are the right choice. I was wondering what other options do we have or anything else you may be able to offer.
TSA answers: You have not indicated whether or not your child has an IEP or 504 Accommodation Plan. If not, he definitely needs one or the other. The disorder, itself, is certainly handicapping him in school and the medications he is taking are meds that cause great fatigue and also sometimes some cognitive dulling. What he need is a modification plan that allows for a shortened school day to accommodate both of these issues with a home instructor after his school day has ended to help him with what he was unable to accomplish at school. School accommodations may also be necessary. Alternative schools and total home schooling are not the answer. Accommodations are. Please let us know what special services he already has in place and we certainly could help you more.
Difficulties on the School Bus
Question:
My son is 11 years old and in 6th grade he has been diagnosed with ADHD and moderate TS. He is seeing a neurologist and we and the school have started a 504 plan. He has been suspended from the school bus for ADHD type behavior, a 9 mile ride for 180 days. My question is what responsibility does the district have in this situation and how do I hold their feet to the fire on this issue. The transportation department agreed to seat him up next to the driver to help avoid problems but they rarely comply.
TSA answers: If a child who is identified with a disability either through a 504 plan or an IEP is experiencing behavior problems, the federal law under IDEA states that a functional behavior plan must be done. This assessment must result in the writing of a positive behavior intervention plan which includes positive and proactive interventions to help improve the behavior. If a suspension for more than 10 days is administered, a manifestation determination hearing must also take place to determine whether the behavior was a manifestation of the disability. It doesn’t sound like either of these things were done. Bus issues are often a result of the neurologically impaired child’s impulsivity and sensory overload in a noisy, chaotic environment, clearly a manifestation of the disability. If you let us know where you are located, I can put you in touch with a TS chapter or advocacy agency in your area who could assist you with this issue.
Qualifying for IEP due to Verbal and Motor Tics
Question:
My son is 6 years and looking back I realize that he has had tics since age two (constant blinking). I just finally put it all together about 3 months ago. We finally were able to visit the neurologist and she diagnosed him as having "verbal and motor tics with Tourette's characteristics." He does not exhibit any OCD or ADHD tendencies. With this diagnosis will he still be covered by the ADA and the others or would he need to be diagnosed with TS to qualify? I don't want to run into problems at school in the future due to semantics! Thanks!
TSA answers: If your child has had motor and vocal tics for more than a year and they wax and wane, he has TS. It sounds like you first need to see a neurologist who knows more about TS. You can contact the national TSA at 718-224-2999 and get from them a list of physicians in your area who specialize in the treatment of TS. As to the ADA, even if the diagnosis of TS has not yet been officially made, if his vocal and motor tics are interfering within classroom performance, he qualifies as a person within a disability under the ADA and is eligible for a 504 plan. You might also write a letter to the director of special education for the school district to ask that he be tested by the school psychologist and the special education teacher to see if any learning disabilities are present. There is a free brochure on this site entitled “Getting Help at School. Where do I begin?” which would be very helpful here. It even has a sample letter that can be adapted to fit your needs.
When do we tell son about Tourette Syndrome?
Question: My son was diagnosed with TS at age of 3. I knew he had it at 2 years old. Our doctor has told us to ignore it, which we have been doing up until this point. My son, now 5 and in kindergarten, is becoming more aware of his tics. I feel we should explain the whole thing to him and my husband disagrees. We have told him that these things he does are just part of him and that is who he is. He doesn't seem to have a problem with the tics, but lately they have gotten worse. He has not shown any other problems yet (ADD, ADHD, OCD). He is very smart, learns things very fast and is a little shy.
My question is how do we go about explaining this to him and when? Is now the right time? I don't want to make him feel weird and different in any way. And at what point do you consider medication? I've heard about magnesium to help tics? Is this a fact?
Any help would be appreciated.
TSA answers: Children with TS become aware at an early age that they are different. They become aware that they have tics that other children do not have. This is especially true for a child like yours who is very smart. He needs some sort of an explanation. TSA has a couple of pamphlets that might be helpful in explaining Tourette Syndrome to him. One is entitled Matthew and His Tics (free on this website) and the other is Simon¹s Special Sneeze Test (see our online store). I was 36 years old and had had TS since the age of 6 when I was first diagnosed. I would have given anything to have had a name for what I had when I was a child. I worried about being crazy and about having a fatal disease that I might pass on to someone else. Your son will probably adjust much better to his disorder if he knows about it from an early age. He will have something to say to other kids when they ask him about his tics. And they will ask.
Medication is an issue to be discussed with your treating physician. Most doctors are reluctant to medicate a child if the symptoms of the disorder are not negatively impacting on the child socially, emotionally or educationally. Some people with TS never take medication. It is extremely important to educate all school personnel working with your son so that his symptoms will be understood and so that he will not be punished for symptoms. TSA provides some excellent educational brochures and videos in its online store and more information in this Education and Education Strategies of this website that would be useful for this purpose. They may also help the teachers with strategies that will help your son continue to do well despite TS.
On the subject of your second question, I have never heard of magnesium for tics.
Child can receive Special Ed. services without being placed in a Special Ed. Classroom
Question:
My son, 8 years old, was diagnosed with TS in May 2003. He has two tics, head/shoulder jerking and moving his nose, almost constantly, which we are on medication for at this time and no other symptoms that I've seen. He is highly intelligent and has no trouble in school whatsoever, even to the point that he's a favorite among all teachers, administration, etc., at the school he attends. The school assistant principal requested he be placed in Special Ed due to TS (he's the only one in the school), however his neurologist has absolutely said, "no way" to that idea. He says there is no reason whatsoever for my son to receive "special" treatment in school. After reading some of your other posts regarding Special Ed for TS children, I'm concerned that maybe my doctor may be harming my child in some way. I have not seen a psychiatrist for this disease as I'm still trying to locate one in my town, but does a TS child "have" to be enrolled in Special Ed if they are functioning extremely well in school? Thank you for any input you might have.
TSA answers: You are absolutely correct. If your child is experiencing absolutely no problems in school, TS is never a reason alone for placing a child in a special education class. If your child has been tested by the school psychologist and/or the school occupational therapist and was found to have specific learning disabilities or if one of the associated disorders such as ADHD is causing significant problems in school, he would be eligible for special education services, but that still does not mean necessarily a special education class. Most children with TS function well in a regular education class with accommodations as needed. Some need very few accommodations. It sounds like the school needs to be inserviced about TS as soon as possible. As you live in Texas, I encourage you to contact the local TSA chapter which may be able to assist you with this. Their contact information is below. Good luck.
Texas - Houston Chapter
281-493-5045 e-mail TSAHouston@aol.com
Homework Strategies for Students with TS and Related Disorders
Question: I am a Middle School Counselor. I have a 6th grade student with Tourette Syndrome and we are facing some challenges regarding homework. He has been lying to his parents about not having homework, or having projects assigned with one day of notice (we give those with a week of notice or two weeks). The parents are very concerned and have started to struggle with the student, leading to closed communication and relationship problems. Of I what I have read, lying is not part of the syndrome. What can I do to help the family and my student? Thank you for your time.
TSA answers: Tourette Syndrome is a neurological disorder resulting from a chemical imbalance in the brain. There is currently no medical test that will clinically diagnose TS. It is therefore diagnosed by the presence of four very observable diagnostic criteria These diagnostic criteria are as follows:
1)Multiple motor tics, 2) Vocal tics, 3)Waxing and waning of symptoms, 4) Childhood onset of symptoms. These are the only criteria that you really need for a diagnosis of TS. HOWEVER, what I also have just described to you is just the tip of the iceberg with TS. To reiterate, TS is a neurological disorder and as such it is almost always accompanied by other neurological disorders which we will now discuss. The most common of these disorders are: 1) Attention Deficit Hyperactivity Disorder (ADHD), 2) Obsessive Compulsive Disorder (OCD), 3)Learning Disabilities (LD). Any of these disorders can exist alone without the others, but it is extremely common to see combinations of these four, TS, ADHD, OCD and LD co-existing.
ADHD can often be the precursor to TS. It appears from birth and the tics most often start nearer the age of 6. ADHD is characterized by several behaviors. Children with ADHD are very fidgety. They have a difficult time remaining seated for any length of time, they seem to be in constant motion. They also exhibit a very short attention span. These children can be very impulsive. They shout out answers before being called on. They interrupt and get in your face. They also have a difficult time initiating or finishing anything. They lack what we call executive function in the brain which means that they are some of the most disorganized children you will ever encounter. These are the kids who always come to your class unprepared and with the wrong materials. They lose everything, pencils, pens, homework, etc. They can be some of the most frustrating children you will ever teach. The 17 year old son of a close friend of mine was recently involved in a very serious car accident. He sustained a traumatic brain injury to the frontal lobe of his brain. This once organized, high functioning honor student and athlete suddenly was having difficulty with the simplest of tasks. His attention span was very short, he could not retrieve words that he always knew, he had become very impulsive and seemed to lack the ability to plan, organize, sequence or understand the consequences of his actions. ADHD results from difficulties in the frontal lobe are of the brain. How easy it is now for me to understand the medical, neurological nature of this disorder.
Strategies for working with the ADHD child are numerous. These are kids who should always be on an assignment sheet which is verified and initialed after each class by the teacher to assure accuracy. These are students who need all assignments broken down for them. They need to be seated in the front of the class, preferably on the side since tics may be more obvious to the rest of the class when the child is in the center front. They need constant help with organization; a set of textbooks at home, color coordinated textbooks and folders to mention a few. The most difficult times for them in a school setting will be the cafeteria, the school bus, crowded hallways and the playground. Structure is lacking in all of these situations and kids with ADHD become very easily overstimulated in these environments. Here is a list of possible accommodations that will be very helpful in working with these children.
Question: Can you please tell me where I find information on the legal aspect of no discrimination for children with TS? Is this in the federal anti discrimination act? My daughter was diagnosed with TS less than 2 years ago. She has very bad vocal and minor motor tics. She competes in gymnastics and I am worried they might try to disqualify her over her vocal tics of bad language. Where do I prove this is not legal? She has full clearance form all her doctors. Thanks for any help.
TSA answers: The ADA (Americans with Disabilities Act) protects individuals from discrimination on the basis of a disability. There are several famous and very successful athletes with TS including pro baseball player, Jim Eisenreich, pro basketball player, Mahmoud Abdul-Rauf and pro soccer player, Tim Howard, to name a few. The most important thing that can be done for your daughter is to educate everyone who works with her either in gymnastics or in school about TS. The Tourette Syndrome Association provides many useful brochures and videos for this purpose and depending where you live, someone from your local TSA chapter may be able to provide an in-service for everyone concerned. (click here to access TSA's online store). You may want to mention this to her gymnastics coach and/or other officials before a problem arises. Education and early intervention are truly the keys tosuccess for all individuals with TS and if it is known that you are aware of the protection offered your daughter under the ADA, a problem is less likely to occur. Good luck.
Accommodations for Graduate Student
Question:
I was diagnosed with Tourettes back in the mid 80's. I have never expected anything, and I have never asked for help, but I need assistance now. I am a graduate student AND I am having great difficulty with qualifying exams. They are about 8 hrs in length, and I'm sure you know that this is difficult for me. Last fall, I missed passing by about 30 points out of 1,200 possible. I may have to leave this university because of my failure. I think, with my disability considered, that I am doing quite well. I have never asked for anything before, but could I get help from the TSA on this?
TSA answers:
As a person with a disability, you are entitled through the ADA (Americans with Disabilities Act) to accommodations because of your disability. I am speaking about such things as untimed tests, tests in a separate location, frequent breaks during testing to name a few, to accommodate your TS symptoms. The vast majority of colleges and universities have an office dedicated to students with disabilities which you should immediately contact. You will need a letter of diagnosis from your treating physician and I would also bring literature from the Tourette Syndrome Association explaining what TS is since many people are still unaware of the disorder. There is also a brochure available in our online store, item #E-115b (or the downloadable item #E-115bDD) entitled Specific Classroom Strategies and Techniques for Students with TS which would be very useful to both yourself and the person working with you from the school¹s disabilities office.
You did not indicate if you had ever been tested for specific learning disabilities associated with TS. There is also a brochure in our online store, item #E-116 (or the downloadable item #E116DD) entitled Learning Problems and the Student with TS which should assist you in this area.
Please let us know if there is anything else we can assist you with.
Continuing Accommodations in High School
Question: In my son's 504 for middle school he received books home, scribe notes and homework assignments sent home daily. He is going into High School in September and at my 20 minute meeting I had to beg for books home, told he could only get scribe notes if he approaches the teachers for them daily. First he would never bring attention to himself to allow his peers to embarrass him by knowing he has special needs and second would he even remember to get it from every teacher every day. I know he is being set up to fail and I don't know how to ensure that he'll be successful when it was a struggle with accommodations. Please give me guidance to protect him from the system .
TSA answers:
Just because your son is entering high school does not mean that his disabilities have changed and therefore his 504 plan should not change. You need to go back to the school and state this. I'm not sure where you live, but if you could e-mail back and let me know, I could refer you to either your local chapter of the Tourette Syndrome Association and/or an advocacy association in your area that could assist you in working with the school. There are also many very helpful brochures on the TSA web site in the Education and Education Strategies Section, or in our catalog that you can order or download and print and provide to the school. One in particular (in our online store) deals with classroom accommodations, Item #E-115b (or downloadable Item #E-115bDD) is entitled Specific Classroom Strategies and Techniques for Students with TS. Good luck.
Stress frequently results in Tics and Difficult Behaviors
Question:
We have ongoing problems with the school regarding our 9 year old who we have
just recently started to suspect has TS. The tics have been obvious for two plus
years but we did not know what it was. Although his pediatrician suspects TS she
does not have enough background to make a positive evaluation. She is trying to
locate someone that can make the clinical evaluation that accepts Medicaid which
is a big hurdle.
Under stressful situations or confrontations with teachers or classmates his tics
become more significant combined with anger outbursts. Can disrespectful
behavior or lack of respect for authority be linked to TS or considered a symptom?
The school is not working with us and appears to want to make ALL students
conform to their idea of model/acceptable behavior and performance, almost
like the military.
TSA answers: I would recommend two things.
1)Contact the Tourette Syndrome Association and ask for the Physician’s
Referral List for your area of the country. You need to immediately locate
a doctor who is knowledgeable about TS to make the proper diagnosis.
2)Download from the Education & Education Strategies Section of this TSA web site the
following articles which will help you know how to proceed.
1)Getting Help at School - Where Do I Begin?, 2)The ABCs of Special Education, 3)Article from Communiqué. Also, I suggest the following items from our online store to provide to the school personnel:
1)Learning problems and the Child with TS (Item#E-116, or downloadable Item E-116DD), 2)Specific Classroom Strategies & Techniques for Students with TS (Item #E-115b, or downloadable Item #E-115bDD). Children with TS are easily frustrated and stressful situations may prompt
them to act inappropriately. They may come more belligerent and sometimes
aggressive. Environmental modifications and an appropriate program at
school can be tremendously helpful.
You have not stated where you live. Also on the web site is a list of all
TSA chapters in the US. there may very well be a chapter near you which I
strongly suggest that you contact. they may be available to provide a
volunteer advocate who can visit the school to educate the teachers working
with your child about TS and also assist you in setting up an appropriate
program for him. Good luck.
Resources for Educating Schools
Question: I live in Canada. I have a TS+ son, 13 years old, in an Alternative class in my county. For a period of 3 months my son was being disciplined for ticcing in class which lead to a violent outburst. After a 3 week stay in the hospital, to be observed and have a med review, he returned to the school with requests from the school for myself to provide "ideas & suggestions" when asked. I have used not only your site but other websites for information to give to the school. As of yesterday my son is suspended for bogus reasons and I need some counseling on how to handle the district when I have a meeting with them (hopefully early next week).
TSA answers: It is really unbelievable that your son is being disciplined for symptoms of his disorder. I would strongly suggest providing the school with as much literature from this TSA website and our catalog possible. I suggest the following: TSA online store items:
Educating Classmates About TS (A Peer In-service). Catalog #E-122 (and downloadable #E-122DD). Children and parents can use this guide to decide when and how to discuss TS with classmates.
Learning Problems and the Student with TS Catalog #E-116 (and downloadable #E-116DD)
Specific Classroom Strategies and Techniques for Students with Tourette Syndrome Catalog #E-115b (and downloadable #E-115bDD)
Available free:
Article by Sue Conners in October 2002 issue of Communique, the magazine of the National Association of School Psychologists, "Tourette Syndrome: An Inside Perspective"
TSA also has a video inservice available for purchase in our online store entitled "A Regular Kid, That's Me" (AV-2), that all of your son¹s teachers need to see to help them better understand this disorder.
I strongly urge you to seek the assistance of any advocacy agency in your area that might be able to help. I will also forward your letter to TS Foundation of Canada for their response. Good luck.
Private Dorm Room for College Student with TS
Question: My daughter is graduating from High School this spring and will be attending university this fall. We are currently working with the university's Housing and Disability Departments on a request that would allow her to live alone in her dorm room because of her TS. She has a vocal tic, grunts and noises, that range in frequency, volume and tone. Her neurologist has also written a letter to the university supporting our request. She has received a teaching fellows scholarship that requires her to live in a specific dorm, each of these dorm rooms should house 2 students. So far the college has not made a decision. Do you have any suggestions or advice regarding this issue? I would welcome any help. So far the University has been very cooperative, but I would also like to know if my daughter has any legal rights.
TSA answers: It sounds like you have done everything right to ensure that your daughter will be be provided with a single room which will be very important to her because of her TS. The letter from the neurologist will certainly be very powerful. However, if for some reason the university does not grant this request, you do legally have recourse under the Americans with Disabilities Act (ADA) which provides for reasonable accommodations for persons with disabilities. What you are requesting is certainly reasonable and I do know of colleges which have granted the same request from students with TS. Please let us know what happens and if you do not obtain a positive response to your request, please contact us again for further assistance.
Question: I am a parent of a 12 year old boy with Tourette Syndrome. He has several related difficulties which are impacting his educational program in sixth grade. Can you refer me to any information on what is recommended for children having behavioral problems due to all the contributing factors of his condition? At present, the school is strongly considering placement in a behavior disorders classroom at another school. I am very apprehensive about all that will be sacrificed for such a move and also whether or not it is even warranted. I have much information on TS, but not a whole lot on behavioral issues, especially as they are appropriately and effectively dealt with in the schools.
Thank you for any assistance you may be able to provide.
TSA answers:
There are many articles written about TS that explain the occurrence of what may be perceived as behavioral problems. Some people perceive tics as behavioral problems. Certainly the co-occurrence of ADHD can appear to be a behavioral issue when it is not understood by educators. These children are very fidgety and impulsive and often exhibit what seems to be "disruptive" behavior. They often become easily overstimulated in chaotic, unstructured environments such as the hallways between classes, the cafeteria, the school bus, etc. A significant number of children with TS also have co-morbid OCD which makes them appear to be stubborn and oppositional. They don¹t transition well from one activity to another. In addition to all of this, children with TS frequently have sensory integration difficulties which causes them to overreact to sensory stimuli such as loud noises, bright lights, tactile stimuli, etc.
I suggest the following articles that are available from our online store for a nominal charge:
Learning Problems and the Student with TS Catalog #E-116 (or downloadable #E-116DD)
Specific Classroom Strategies and Techniques for Students with Tourette Syndrome Catalog #E-115b (or downloadable #E-115bDD). Free:
Article by Sue Conners in October 2002 issue of Communique, the magazine of the National Association of School Psychologists, "Tourette Syndrome: An Inside Perspective"
From the TSA online store, I also suggest:
Tourette Syndrome and Repeated Anger Generated Episodes (M-357)
Tourette Syndrome in the Classroom (E-101),
TSA Educator's Curriculum (E-120). You have also not indicated whether or not your child is classified by the Special Education Committee for special education services. If not, please find the following articles in this Education & Education Strategies Section of the TSA web site which should be helpful:
Section 504, the Americans with Disabilities Act (ADA) vs. The Individuals with Disabilities Education Act (IDEA) What is the Difference?, Getting Help at School...Where Do I Begin?,
The ABC's of Special Education. It is not appropriate to place a child with TS in a behavioral class. They have a neurological disability, not a behavioral, emotional disturbance. If you let us know where you are located, we can put you in touch with the local TSA Chapter which should be able to assist you with school advocacy. Good luck.
Question:
I have a 12th grade student who has not passed his Graduation Exam in Reading and Language Art after numerous tries. He has earned all his credits in the regular classroom, has above average intelligence, and has passed all other sections of the Grad.Exam. He was diagnosed with Tourette Syndrome some years ago. What can I do to help him? How much of a role is test anxiety playing in this?
TSA answers:
There are many unanswered questions. Is this child classified for special education services under IDEA or an accommodation plan under Section 504 of the ADA? As a student with Tourette Syndrome, he is entitled to services to accommodate his symptoms. If tics interfere, he may also have ADHD and/or OCD (Obsessive Compulsive Disorder) which may be interfering with his performance. Test anxiety can be a major issue for students with TS. Timed tests are particularly difficult. He may be attempting to hold in tics while testing and therefore unable to concentrate on anything else but the suppression of his tics.
I strongly suggest that you read through the brochures that are free in this section of the TSA website. I especially recommend the following FREE articles:
Getting Help at School...Where Do I Begin?,
Article by Sue Conners in October 2002 issue of Communique, the magazine of the National Association of School Psychologists,"Tourette Syndrome: An Inside Perspective",
Section 504, the Americans with Disabilities Act (ADA) vs. The Individuals with Disabilities Education Act (IDEA) What is the Difference?
From our online store (at a nominal charge):
Learning Problems and the Student with TS Catalog #E-116 (or downloadable #E-116DD)
Specific Classroom Strategies and Techniques for Students with Tourette Syndrome Catalog #E-115b (or downloadable #E-115bDD).
Can school remove student due to vocal tics?
Question:
My child attends a public school in Michigan. If his vocal tic becomes disruptive (no words or obscenities) can he be asked to leave the classroom or be put in a special ed classroom? Thank you very much for your answer.
TSA answers:
No, he cannot be put in special education nor asked to leave the classroom. School must provide a free and appropriate education for all children in the least restrictive environment. The school needs to have an accommodation plan in place that will allow your son to stay in the classroom despite the vocal tics. This should include giving him frequent breaks out of the classroom to help release tics in a less embarrassing environment. He should be allowed to take a quick trip to the bathroom, the drinking fountain or to run an errand for the teacher. Most importantly, the entire class should be educated about your child¹s TS, so that they understand the vocal tics. This will make your child more comfortable and at ease in the classroom and as result, the tics just naturally calm down. Stress and anxiety aggravate tics. Once the stress is alleviated, the tics will be calmer.
TSA has a brochure on its online store entitled Educating Classmates about TS Catalog #E-122 (and downloadable #E-122DD) which is very good to use for this purpose. Once everyone understands the disorder, the vocal tics become no more disruptive to the class than the hundreds of other things that disrupt classes everyday. Kids cough, sneeze, blow their noses, drop books, sharpen their pencils, etc. The intercom interrupts classes. Once the tics are understood, they just become one of the many things that interrupt our classes.
School says that child with TS is disruptive to the education of peers
Question: I am writing from the other side of the table and would like your opinion on this situation. I have a 9 year old son who is in 4th grade who has a boy in his class who suffers from TS. First off let me say that I am not an unsympathetic monster and I understand that this child has an uncontrollable and terrible disease.. I know his parents love him and want the very best for him as all parents want for their child. I also now have learned from research that this child has coprolalia which effects less than 15% of TS sufferers. I have read in your writings that the child's peers should be educated about this disease so that they can understand and accept the symptoms associated with it. This child is a major disruptive force in the classroom. His actions are directly affecting the learning progress of the remaining 31 kids in the class. While this child with TS has the right to the best education possible under the Public School System what about the other 31 kids rights to to their best possible education. I feel when they evaluate a child with TS in a mainstream classroom setting they should also evaluate the effects it will have on the rest of the students. Thank you for your time.
TSA answers:
It is difficult to determine from your letter whether it is the tics that this child is exhibiting that are interfering or whether the child also has ADHD, a common associated disorder of TS. I taught for 33 years in a public school, and am very aware of the disruptions that one faces in a classroom everyday. TS may be just one of these disruptions. It sounds to me like the school has not made necessary accommodations for this child to assist him with functioning successfully in the classroom. This could include frequent breaks to release tics, preferential seating, educating the other students in the class, freedom of movement, tests in a separate location, to name a few. This child may or may not be classified for special education assistance. This does not necessarily mean a separate classroom setting, but rather accommodations and strategies in the regular classroom and the help of a special education teacher.
There are so many unanswered questions here that it is difficult to comment appropriately. I am quite appalled by the size of the class . 32 students is too large a class and especially if a child is suffering from TS. Most importantly, the entire class should be educated about the child¹s TS, so that they understand the vocal tics. This will make the child more comfortable and at ease in the classroom and as result, the tics just naturally calm down. Stress and anxiety aggravate tics. Once the stress is alleviated, the tics will be calmer.
TSA has a brochure in its online store entitled Educating Classmates about TS Catalog #E-122 (and downloadable #E-122DD) which is very good to use for this purpose. Once everyone understands the disorder, the vocal tics become no more disruptive to the class than the hundreds of other things that disrupt classes everyday. Kids cough, sneeze, blow their noses, drop books, sharpen their pencils, etc., etc. The intercom interrupts classes. Once the tics are understood, they just become one of the many things that interrupt our classes and become no more disruptive than the many other things that teachers and students deal with every day.
Possibly you could download some of the free articles from this site, or purchase (or purchase for download some of the helpful brochures from the TSA online store) and present them to the teacher. One in particular entitled Specific Classroom Strategies and Techniques for Students with Tourette Syndrome Catalog #E-115b (or downloadable #E-115bDD) could be very helpful. TS is a very misunderstood disorder even by members of the education profession. You could be doing a tremendous service to the teacher, the class and most importantly, the child with TS and in a very positive, proactive way. Good luck.
Question: I am a parent and I have a question regarding my nine year old son in his third grade classroom in a private school. He does well in all of his subjects except penmanship. Now I know that poor penmanship is a symptom of TS due to faulty hand to eye coordination, but his teacher is also complaining that he never finishes his work on time. He's "dilly-dallying" in the words of his teacher. Should I tell the teacher that due to his TS that he should have more time to finish class work? Is there any way that we can improve his sloppy cursive writing? He is a smart young boy; he's just really having problems in the neatness area. He has been diagnosed with a mild form of TS, and he is not on any medication. Can you please help me?
TSA answers:
Even as a private school student, your child is entitled to services and/or an accommodation plan. You need to write a letter to the director of special education for the school system where you live. I suggest that you use this section of the TSA web site and read the articles below which will lead you through the process. They include a sample letter that you could adapt for your use. Testing will need to be done by the school system. I would especially request a occupational therapy evaluation which should pick up on his handwriting problems.
1)Getting Help at School - Where Do I Begin?
2)The ABC¹s of Special Education
3)from our online store at a nominal charge: Specific Classroom Strategies and Techniques for Students with Tourette Syndrome Catalog #E-115b (or downloadable #E-115bDD)
The last article will assist you and the school system in knowing what accommodations he is in need of to assist him, e.g. un-timed tests, assistance with long written assignments, etc.
Good luck and let us know if we can be of further assistance.
Question:
I am the second grade teacher of an eight year old who has been exhibiting facial tics, including neck stretching, eye blinking and general contortions of the face. I think he does not realize he is doing this. These symptoms started about five months ago with eye blinking and have escalated to the point where they are becoming very noticeable. He is a very bright child with a very high cognitive and verbal IQ. When I ask him a question, whether it be a simple personal question or about academics, he stares blankly and then answers about fifteen or more seconds later. He seems to have ADD (not ADHD) as he is unable to focus on any academic work. While he is working one on one with me or another adult, he quite often is not able to focus or receive the information. Much of his day is spent sitting at his desk playing with a minute piece of paper or just staring at the wall. Even in listening corner when all children are directly in front of me, he looks at me but is not processing what is said. The school's response has been to put him in the special ed. room for a couple of pull out sessions a day to improve his reading and math skills. His mother and I want more for him than this. He is in the process of being seen by a neurological pediatrician. Mom and I suspect TS. My questions are:
1. Do TS and ADD often go hand in hand?
2. As his teacher, is there something I should be doing to help him focus?
3. Does prolonged playing of video games or working in front of a computer screen have an adverse affect on children with TS?
TSA answers:
The symptoms that you are describing are definitely symptoms of Tourette Syndrome and you are on the right path by referring the family to a pediatric neurologist for an evaluation. I am suggesting that thefamily contact the local TSA chapter for a physician's referral list which is provided by our national office to assure that the neurologist they are seeing is an expert in the area of TS. The local chapter can be contacted at:
Washington Chapter (serving Washington and Oregon)206-621-2108
e-mail: tsawashingtonchapter@yahoo.com
Tourette Syndrome is a neurological disorder and is therefore is very frequently accompanied by other neurological disorders. The most common of these co-morbid disorders are ADHD, Obsessive Compulsive Disorder and Learning Disabilities. You are on the right track also suspecting ADHD/ADD. Learning Disabilities with children with TS are often in the area of non-verbal LD which could include processing difficulties, dysgraphia, fine motor and visual motor deficits, to name a few. Sometimes ADHD/ADD can be confused with processing problems or sometimes they co-exist making the situation even more difficult. I would strongly recommend a complete psychological evaluation, an occupational therapy evaluation and an evaluation by the speech and language therapist. Given all these evaluations, these subtle disabilities are sometimes overlooked and further testing is required by an outside neuropsychologist.
I am also strongly recommending the following brochures/articles that can be found and downloaded on this website:
1) My article from Communique, magazine of the national Association of School Psychologists. From our online store (at a nominal charge):
Learning Problems and the Student with TS Catalog #E-116 (or downloadable #E-116DD)
Specific Classroom Strategies and Techniques for Students with Tourette Syndrome Catalog #E-115b (or downloadable #E-115bDD)
There are also several other excellent brochures for sale in our online online store.
Good luck.
Question: My son is 19 and will be entering college in the fall. He has been accepted to several colleges, however, I am very concerned that his "primary" disability, executive function, will be his biggest challenge. He has had good support at the school he attends now, but I don't think that colleges will offer that same level of services. Is there any way I can help him prepare for what he will face in college? Is there a summer program that will help him? Thanks for the help
TSA answers:
Your best bet is to contact the college and make an appointment with their office that deals with students with disabilities. They sometimes have summer programs to assist students with disabilities entering their facility. It would also be a good opportunity for you and your son to set into motion all of the services that he is entitled to and will receive while he is there.
Another very important point to remember is that a child with an IEP in high school is entitled to transition services long before he leaves high school. Below is an excerpt from the Federal Office of Special Education Services pertaining to this.
Transition Services
Transition refers to activities meant to prepare students with disabilities for adult life. This can include developing postsecondary education and career goals, getting work experience while still in school, setting up linkages with adult service providers such as the vocational rehabilitation agency--whatever is appropriate for the student, given his or her interests, preferences, skills, and needs. Statements about the student's transition needs must be included in the IEP after the student reaches a certain age:
* Transition planning, for students beginning at age 14 (and sometimes younger)--involves helping the student plan his or her courses of study (such as advanced placement or vocational education) so that the classes the student takes will lead to his or her post-school goals.
* Transition services, for students beginning at age 16 (and sometimes younger)--involves providing the student with a coordinated set of services to help the student move from school to adult life. Services focus upon the student's needs or interest in such areas as: higher education or training, employment, adult services, independent living, or taking part in the community.
The IEP team at your son's school should be addressing these needs and making recommendations. They should have put you in touch with local agencies to assist you with this process.
Receiving support from state agencies as an adult
Question: We have a 20 year old son who was diagnosed with Tourette Syndrome when he was about 5. We have made it this far getting good support from school districts etc. the Problem now is that we are applying with the San Diego Regional Center for help. We applied once before when he was about 17 and were rejected and probably made a mistake by not appealing. According to our intake person our only way to qualify under California law is under the "other" category which is "other handicapping conditions closely related to mental retardation or requiring similar treatment" This is in context with the law stating a developmental disability as a diagnosis of one or more of the following: mental retardation, epilepsy, cerebral palsy, autism, than the other category I listed above. He also has a full scale IQ of 72 to 74. I'm looking for help regarding information that will help us qualify him for assistance from the Regional Center under California State law.
TSA answers: A "developmental disability" is a severe, chronic disability of a person five years of age or older which -- 1.is attributable to a mental or physical impairment or combination of mental or physical impairments; 2.is manifested before the person attains age twenty-two; 3.is likely to continue indefinitely; 4.results in substantial functional limitations in three or more of the following areas of major life activity: self-care, receptive and expressive language, learning, mobility, self-direction, capacity for independent living and economic self sufficiency,need for individually planned and coordinated services. Examples of developmental disabilities include children and adults with a wide range of diagnoses, including mental retardation, cerebral palsy, autism, spinal cord injury and severe head injury, so long as the condition began before age 22 and therefore affected the person's development. This definition is taken from the Developmental Disabilities Assistance and Bill of Rights Act (DD Act)
This definition clearly includes Tourette Syndrome. In addition to that, your son also has a "borderline" IQ which even further qualifies him for this classification and, therefore, assistance. An individual is considered to have mental retardation based on the following three criteria: intellectual functioning level (IQ) is below 70-75; significant limitations exist in two or more adaptive skill areas; and the condition is present from childhood (defined as age 18 or less) (AAMR, 1992). (American Association on Mental Retardation)
I suspect that the reason for the original denial for services was lack of information about TS. You are certainly entitled to services. I strongly urge you to reapply and to be armed with all of the following:
1) TSA, Inc. literature that defines TS and backs up your claim that this is truly considered a developmental disability.
2) An advocate/lawyer who specializes in DD. You may want to contact Legal Aid Services in your area for assistance.
3) Contact the TSA Southern California Chapter to see if someone can participate in the process with you.
California - Southern California Chapter (La Palma) TSA: 818-344-0948
email bcourdy@comcast.net.
Question: I am the accommodations services specialist at a community college. There is a possibility that an individual with Tourette could be attending the college next year. Evidently the Tourette is manifested by outbursts of crude language. I know we can help to relieve some stress by providing extended time on tests in distraction free environment and scheduling classes so they aren't back to back. I am not sure what to do about the inappropriate language. Has this issue been presented to you in the past and do you have any suggestions of how to deal with the situation in a college classroom.
TSA answers: There are many appropriate accommodations for a student with TS. Much depends on the severity of the disorder and, in particular, the associated neurological disorders. This should be easily obtainable from the student and/or his high school records. I strongly suggest a TSA brochure from our online store entitled Specific Classroom Strategies and Techniques for Students with Tourette Syndrome Catalog #E-115b (or downloadable #E-115bDD).
The vocal tic that takes the form of inappropriate language is one that is only found in a minority of the TS population. It is called coprolalia and is obviously one of the problematic symptoms. Like all other motor and vocal tics associated with TS, this is uncontrollable. The only way to deal with this symptom is to educate all of the students in this individual¹s classes about TS. Ignorance is usually the root of the problem and once everyone understands, the problem is solved. There are many useful TSA videos that would help with this. I recommend one of the following:
I¹m a Person, Too
Family Life with TS - Personal Stories - A Six Part Series
Blurting Out in Class; Writing as Punishment
Question: I have a 12 year old son with TS ,OCD and ADHD. I have questions. He will speak out in class without raising his hand . He is in self contained class and stays in trouble. We have moved his school to one that is out of district. He has to write sentences every day for behavior like speaking out and inappropriate things. He has 3 classes out and 3 in. Please we need help in dealing with the school. I find it hard to understand if this is behavior ,Tourettes or ADHD. I have good doctors and seem to get nowhere in understanding this please email me back we really need the help. He has a IEP and BIP.
TSA answers: This behavior is clearly related to his ADHD. Children with ADHD are very impulsive children. They often speak out without raising their hand, interrupt and are very fidgety. His tics may also being misperceived as inappropriate behaviors. Having him write sentences as a punishment for symptoms of a medical disorder is extremely inappropriate and also an archaic punishment. It appears that his BIP may not be suitable for a child with these disorders.
I strongly suggest that you download literature from the this website¹s Education & Education Strategies section for yourself to read and also to provide to his teachers. One article in particular deals with specific strategies and techniques for dealing with these disorders in a classroom setting. TSA also has some excellent videos that can be shared with his teachers. I recommend A Regular Kid, That¹s Me and Teaching Children with Tourette Syndrome: A Resource for Educators. If you let us know what part of the country you are from, I will try to connect you with your closest TSA Chapter. Possibly they could get a chapter representative to come to the school to provide an in service to the teachers.
Question:
Thank you so much for including this feature, it is so helpful for those of us out here in the hinterlands with minimal support available.
My question is in regard to the socialization issues. I had a middle school age boy with a long history of ADHD, with OCD and TS symptoms surfacing about a year and a half ago. We've done some trial and error with meds and have settled on a regimen that mostly addresses the ADHD and OCD symptoms as the tics seem to be of minimal impact at this point. This is a kid who has been schooled in social skills and was able to effect them to some degree until the newer symptoms developed. As long as he's in a minimally stimulating environment, he can get along OK, but if there is more than 1 or 2 kids in the room, his anxiety levels ratchet up, he becomes irritable, loud, bossy, and verbally aggressive, to the point of threats and very cruel statements including obscenity and profanity. Removed from these situations he's able to state what he should have done, but seems to be unable to function in larger groups. Obviously, he has no friends, cannot be involved in most after school activities and even cousins won't spend any time with him. Our counseling resources are slow in coming, mostly due, I guess, to the remoteness of Alaska and the scarcity of professionals with an interest in neurobehavioral disorders. I'd appreciate any suggestions you may have.
TSA answers:
Many children with TS and associated disorders have the tendency to become easily overwhelmed in overstimulating environments. Their most difficult situations in a school setting can be the cafeteria, the school bus, the playground, crowded hallways and unstructured classrooms. This is due in a large part to sensory difficulties. These could be in any of the senses, tactile, auditory, olfactory, etc. The most obvious solution is to adapt the child's environment as much as possible to avoid these types of situations. Have him change classes a few minutes early to avoid crowded hallways, find alternative eating sites with a small group of friends, provide preferential seating on the school bus or a smaller quieter bus. However, this is not always totally possible. I strongly suggest that you have an sensory integration evaluation done as soon as possible by the school's or an outside occupational therapist. OTs have many very helpful techniques that they use to help children modulate sensory input and how they react to it. I would also suggest a book written by Carol Kranowitz entitled The Out of Sync Child which deal with the issue of sensory integration dysfunction. Many children with TS also have difficulties in the area of fine motor and visual motor impairment. This results in very poor handwriting, hand cramping and difficulty copying things from the chalkboard or textbook to their paper. The OT can also be very helpful in this area.
Question#2: I am the parent of a 7 yr old daughter in 1st gr. in MN. She was diagnosed a yr ago with TS and I think she may have ADHD. She is very bright and doing well academically in school, but is having difficulties socially. I was wondering if you could give me some suggestions as to literature I could read, having to do with helping her with social skill development with her peers. I am a very involved mom and the school and her peers are well aware of her TS, even though her symptoms have been mild-moderate up to this point. Thanks for any suggestions you can pass on!
TSA answers: This is not at all an uncommon problem for children with TS. They often have problems with age appropriate social skills. This happens for a lot of reasons. They often have a difficult time expressing ideas and feelings or responding to the same from other children. They also don't seem to realize the effect of their own behavior on others. They don¹t adapt well to new situations. often have poor impulse control and can become easily over-stimulated which causes them to act out inappropriately. Many parents report that their children with TS prefer with playing with children 3-4 years younger than they are.
Teaching social skills is very important, but also very challenging. It should optimally be done in normal life situations that the child will encounter. It is therefore a good idea to involve the child in after school activities, sports, clubs, scouts, etc. However, social skills must be practiced because they do not always come naturally for children with neurological impairments. Group therapy is probably the best setting, but a trained therapist is essential. Many schools run social skills groups for children with these difficulties. Be sure to speak to the school counselor, psychologist or social worker to see what they have available.
I can give you a few suggestions of materials that might be helpful, but I also encourage you to contact your local TSA chapter to enquire about therapists in your area that are recommended.
The following is an excerpt from OSEP (Office of Special Education Programs) for the US Department of education and indicates the school¹s role in providing such programs for children and also some useful resources.
Developing Social Competence for All Students
Claudia G. Vincent, Robert H. Horner, and George Sugai, ERIC/OSEP Digest
(July 2002)
Schools are under pressure to create safe, orderly and effective learning environments where students acquire social as well as academic skills that will allow them to succeed in school and beyond. This pressure has emerged from real disciplinary challenges combined with wariness of school violence sensationalized in the media (Lewis & Sugai, 1999; Sugai et al., 2000; Walker, Nishioka, Zeller, Bullis, & Sprague, 2001; Walker & Shinn, 2002). At the same time, teachers, parents, and administrators report more and more time consumed by disciplinary measures intended to correct students' antisocial behaviors (Skiba& Peterson, 2000). Traditional punishment and exclusion may provide a short-lived reprieve from disciplinary problems, but research has shown that in the long term, punishment and exclusion are ineffective and can lead to renewed incidents of disruption and escalating behaviors (Mayer, 1999).
Over the last two decades, school populations have become increasingly diverse. Children sharing the same classroom come from a broad range of cultures, languages, and socio-economic backgrounds. Schools face the challenge of creating environments that are sensitive to a myriad of individual backgrounds and support all students' social and academic success. They can no longer afford to focus exclusively on delivering academic curricula; they are also responsible for establishing and maintaining socio-cultural microcosms that teach children to negotiate the diverse values and social norms of a pluralistic society. This digest describes the challenges of social skills instruction and provides three strategies to improve all students' social competence. Social skills are crucial for mutually productive interactions and durable interpersonal relationships. Children benefit not only socially, but also academically, when appropriate behaviors increase their access to instructional time. We emphasize the importance of teaching individual social skills within the context of establishing a school-wide culture of social competence.
The success of teachers and administrators in helping students develop social competence depends on their ability to (a) develop a school-wide culture of social competence, (b) infuse the curriculum with situation-specific social skills lessons that target key behaviors, and (c) match the level and intensity of instruction to students' social skills deficits (Gresham, 1998; Sugai & Lewis, in press).
DEVELOPING A SCHOOL-WIDE CULTURE OF COMPETENCE
Schools are complex environments comprising heterogeneous populations and activities. Students, teachers, staff, administrators, and parents often have differing expectations of how a school should function. To establish a school climate acceptable to all, a team representing all members of the school community should be formed and asked to define school-wide behavioral expectations (Lewis & Sugai, 1999). School-wide behavioral expectations typically
1.address the most frequently observed problem behaviors across all school settings,
2.are condensed into three to five short and easy to remember statements, 3.are age appropriate
, 4.are positively stated (e.g., "be respectful" instead of "don't tease") (Sugai & Lewis, in press).
Visibly posted throughout the building, school-wide behavioral expectations are intended to publicize the social values shared by all members of the school community and the behaviors representing those values. For instance, a middle school in Oregon developed the following school-wide behavioral expectations:
1. Be Respectful
2.Be Responsible
3.Follow Directions
4.Hands and Feet to Self
5.Be There-Be Ready (Taylor-Greene et al., 1997). Formulating and posting school-wide behavioral expectations alone does not automatically result in improved student behavior. All students need to be taught directly and actively how to perform the behaviors representing the school's social values (Horner, Sugai, Lewis-Palmer & Todd, 2001, Lewis & Sugai, 1999; Sugai & Lewis, in press). A one-day training could be conducted at the beginning of the academic year or at intervals throughout the year to illustrate the school's behavioral expectations through concrete examples in various school settings (Taylor-Greene et al., 1997). For instance, being respectful can mean waiting one's turn in line in the cafeteria or raising one's hand to get the teacher's attention in the classroom.
To encourage students to practice the taught behaviors, students' performance of appropriate behaviors should be reinforced through routine acknowledgments and monitored through ongoing data collection (Taylor-Greene et al., 1997). In comparison to students who receive teacher attention only in the form of reprimands for rule violations, students who know that their socially appropriate behaviors are appreciated by teachers and staff are more likely to repeat those behaviors and encourage their peers to behave appropriately (Sugai & Lewis, in press). Once a behavioral skill becomes functional for a student (i.e., is positively recognized by teachers and peers) the skill is likely to become part of the student's general behavioral repertoire.
SOCIAL SKILLS LESSONS TARGETING KEY BEHAVIORS IN SPECIFIC SITUATIONS
To support the development of a school-wide culture of competence, social skills instruction must be an integral part of the school's curriculum and daily operations (Sugai & Lewis, in press). During any given school day, students encounter a variety of settings, for example, the school bus, hallway, classroom, cafeteria, playground, and gym. Each setting requires specific skills for successful interactions with others sharing the same space.
With mounting pressure to improve students' academic achievements, classrooms have become the focal point for improving student behavior through social skills instruction, thereby ensuring students' access to academic content (Sugai &Lewis, in press). To create a classroom environment where all students can learn, teachers must teach appropriate social skills giving students access to the academic curriculum. Appropriate behaviors, such as raising one's hand to signal for help or sitting still during seat-work help to ensure access to the academic content being delivered. Once students acquire the skills necessary for successful classroom interactions, they will be more likely to generalize their acquired skills to other settings and contribute to the school-wide culture of social competence (Horner et al., 2001; Sugai & Lewis, in press).
Teachers need to respond to a student¹s inability to perform a social skill exactly as they would to a student¹s inability to complete an academic task. If students do not know how to solicit teacher attention appropriately, they need to be actively and systematically instructed to signal for help, for example, by raising their hands. Situation-specific social skills instruction should focus on teaching behaviors perceived as functional by students and others with whom they interact. For instance, getting teacher attention must result from raising one's hand, and talking out or leaving one's seat must not result in getting teacher attention. If an inappropriate behavior is made functional for a student by evoking the desired response, teachers inadvertently might encourage the performance of inappropriate behavior. Socially appropriate behaviors in the classroom are likely to decrease the amount of time spent on disciplinary actions and increase students' access to academic content. Situation specific instruction should incorporate a model or description of the appropriate skill, provide students the opportunity to observe and practice the skill, assess the students' ability to perform the skill, provide reinforcement contingent on performing the taught skill, and avoid reinforcing inappropriate behavior Gresham, 1998; Sugai & Lewis, in press).
MATCHING THE LEVEL AND INTENSITY OF INSTRUCTION TO STUDENTS' NEEDS
Children enter school with varying degrees of social competence. While some students are fluent in social skills and therefore able to interact appropriately with peers and teachers, others might not have learned to perform socially appropriate behaviors and, therefore, are at risk of low academic achievement and developing antisocial lifestyles (Walker et al., 1996). Although variation exists, general research has shown that approximately 80% of a school's student population responds to instruction in school-wide behavioral expectations, and approximately 15% of students need additional instruction in the form of targeted situation-specific lessons. Students who are unresponsive to school-wide and targeted instructions comprise about 5% of a school's population and present the toughest challenge to the daily operations of a school (Horner and Sugai, 2002; Sugai et al., 2000; Walker et al., 1996). Addressing individual students' persistent antisocial behaviors requires a systematic process of determining why a student repeatedly performs the specific behaviors (Sugai et al., 2000).
Functional behavioral assessment offers strategies to identify events and conditions triggering a specific behavior and the functions maintaining the behavior (i.e., get/access or escape/avoid). Direct observations, review of archival data, or interviews with students, their teachers, and/or their parents help to define the circumstances under which the problem behavior occurs. Based on this information, individual behavior support plans focusing on teaching and reinforcing socially appropriate replacement behaviors can be designed and implemented to match individual students' skill deficits (Sugai et al., 2000). To use the technology of functional behavioral assessment effectively and efficiently, schools need to focus on training personnel to conduct functional behavioral assessments and implement the resulting individual behavior support plans.
REFERENCES
Gresham, F.M. (1998). Social skills training: Should we raze, remodel, or rebuild? Behavioral Disorders, 24, 19-25.
Horner, R.H. & Sugai, G. (2002, April). Overview of Positive Behavior upport. Paper presented at the 2002 Convention of the Council for Exceptional Children, New York.
Horner, R.H., Sugai, G., Lewis-Palmer, T., & Todd, A.W. (2001). Teaching school-wide behavioral expectations. Report on Emotional and Behavioral Disorders in Youth, 1(4), 77-79, 93-96.
Lewis, T., & Sugai, G. (1999). Effective behavior support: A systems approach to proactive schoolwide management. Focus on Exceptional Children, 31(6), 1-24.
Mayer, G.R. (1999). Constructive discipline for school personnel. Education and Treatment of Children, 22(1), 36-54.
Skiba, R.J. & Peterson, R.L. (2000). School discipline at a crossroads: From zero tolerance to early response. Exceptional Children, 66(3), 335-356.
Sugai, G., Horner, R.H., Dunlap, G., Hieneman, M., Lewis, T.J., Nelson, C.M., Scott, T., Liaupsin, C., Sailor, W., Turnbull, A.P., Turnbull, H.R., III, Wickham, D., Reuf, M., & Wilcox, B. (2000). Applying positive behavioral support and functional behavioral assessment in schools. Journal of Positive Behavioral Interventions, 2, 131-143.
Sugai, G., & Lewis, T. (in press). Social skills instruction in the classroom. In E.J. Kame'enui & C. Darch (Eds.). Instructional classroom management. (2nd ed.). White Plains, NY: Longman.
Taylor-Greene, S., Brown, D., Nelson, L., Longton, J., Gassman, T., Cohen, J., Swartz, J., Horner, R.H., Sugai, G., & Hall, S. (1997). School-wide behavioral support: Starting the year off right. Journal of Behavioral Education, 7, 99-112.
Walker, H.M., Horner, R.H., Sugai, G., Bullis, M., Sprague, J.R., Bricker, D., & Kaufman, M.J. (1996). Integrated approaches to preventing antisocial behavior patterns among school-age children and youth. Journal of Emotional and Behavioral Disorders, 4, 193-256.
Walker, H.M., Nishioka, V.M., Zeller, R., Bullis, M., & Sprague, J.R. (2001). School-based screening, identification, and service-delivery issues. Report on Emotional & Behavioral Disorders in Youth, 1(3), 51-52, 67-70.
Walker, H.M., & Shinn, M.R. (2002). Structuring school-based interventions to achieve integrated primary, secondary, and tertiary prevention goals for safe and effective schools. In M.R. Shinn, G. Stoner, & H.M. Walker (Eds.), Interventions for academic and behavior problems: Preventive and remedial approaches. National Association of School Psychologists. Silver Spring, MD.
Can Tics Be Controlled Through Behavior Management?
Question: I am taking a course in behavior management for young children.
I am not clear how to handle a small child with TS. If he/she is not taking
any meds, how can any of the tic behavior be controlled? Is it just a matter
of explaining to the other students and their parents to be tolerant? IT
seems like he/she might be too young to control the tics for a time, and then
release the energy later. Any advice you have would be welcomed. Thank you.
TSA answers:
Tics are nearly impossible to control for any length of time, especially for a young child. Encouraging children to control tics is also not a good thing to do. Even when someone is able to suppress for short periods of time, the tics build. It can be compared to suppressing a sneeze. The longer you hold it in, the louder it will be. Tics are the same. This could result in an outburst of tics or in a behavior problem due to the frustration and anxiety of trying not to tic. Also, when someone is trying to hold in tics, that's all they can concentrate on. The lesson in class goes out the window. It is far better to give the child frequent breaks out of the classroom to help release tics. A short trip to the bathroom, the drinking fountain, a errand to run can be very helpful.
I also strongly recommend that all students who come into contact with the child be educated about TS. There is a pamphlet available through our online store entitled Educating Classmates about TS Catalog #E-122 (and downloadable #E-122DD) that can be used for this purpose.
Question:
I am a tutor of a high school student with TS. Her medication has made it so that she cannot be integrated with other students. She is up all night and/or sleeps all the time. Her school has put her on an alternative program so she can still graduate without attending classes however, this program still poses problems. Is there any program that would help pay for the high cost of home schooling? The parents, school administrators, and myself feel that this would be the best for this child. Thanks,
Tutor
TSA answers:
The school system is completely responsible for home schooling if this girl cannot attend school because of her disability. A letter from her treating physician is all you should need indicating that because of her TS, she cannot attend regular classes. Having said that, I very rarely advocate for long term home instruction. Is it possible that the school system is uneducated about TS and because of that has been unable to integrate this girl?
In addition, this child is very likely eligible for social security disability insurance (SSI) to assist with her medical as well as living and educational expenses. If you e-mail us back and let us know where you are located, we can help put you in touch with local agencies to help you.
IEP ACCOMMODATIONS FOR ACT TESTS
Question: My son has Tourette Syndrome and has been given extended time on tests through his IEP. When signing up for the ACT test he was denied extended time because "tic and tremor disorder alone is not a disability