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How Parents Can Help A Child With Tourettes

When you look at someone with Tourettes, all you see or hear are the tics. You don’t see the constant struggle, the constant commotion that is going on inside the person’s body. Although it might be easy to assume that when a person is not ticcing, they are okay or calm or not experiencing anything related to Tourettes, more often than not, that assumption would be entirely incorrect. tourettesparentmain

Here are a few tips on how parents can help a child with Tourettes

  1. Learn as much as you can about Tourettes. The internet can be a scary place, so make sure you are getting your information from reliable sources.
  2. Connect with other parents for support, guidance and referrals. Many times parents of kids with disabilities become isolated from friends and family. Know that you are not alone and there is a community of people out there who share your struggles. Ask for referrals from trusted people within these connections so you can find professionals experienced with Tourettes and the co-morbid disorders.
  3. Understand that as confusing as the symptoms can be for you, it is even harder for the teachers. Do your best to work with the teachers and the school in order to help them understand symptoms of Tourettes, the co-morbid disorders, and what your child needs to succeed. Try to be patient with them, as this is a learning experience for them too.
  4. If the teachers are having a hard time getting your child to do work at school, remember it will probably be even harder for you to get him to work at home. Don’t expect to do all the day’s school work PLUS the homework in one evening. Work with the school to develop a plan that will accommodate your child’s needs but still keep him moving in the right direction. This could include such things as a motivational intervention plan, school counseling (with other kids who have Tourettes, if possible), modified work, assistive technology, and built-in teacher-student time in order to foster a positive, understanding relationship.
  5. Have your child connect with other children with Tourettes. Living with a body out of control can be embarrassing and very scary. As hard as it is for you, it’s harder for your child. Children need to know they are not alone and the connection between kids with Tourettes can be very powerful and therapeutic. Look in your area to find meetings, activities and camps for kids with Tourettes.
  6. Introduce your child to successful adults with Tourettes. This provides hope and will most likely increase their motivation to overcome their challenges. Keep reminding them (and yourself) that there IS life beyond Tourettes.

Click here for more information on what it’s like to live with Tourettes. Readers can also click here to learn how teachers can help a child with Tourettes.

NSPT offers services in BucktownEvanstonHighland ParkLincolnwoodGlenview, Lake Bluff and Des Plaines. If you have questions or concerns about your child, we would love to help! Give us a call at (877) 486-4140 and speak to one of our Family Child Advocates today!

Meet-With-A-Neuropsychologist

About the Author: Shari was the 3rd person in IL to be diagnosed with Tourette Syndrome (1976). Her parents co-founded the IL TS chapter along with several others, including Joe Bliss. In 1978, while at a board meeting in her parent’s home, Mr. Bliss told Shari about his theory of premonitory urges and provided some tips and tricks on how to control the tics. It was the first time Shari felt “understood” and attributes much of her success to Mr. Bliss and his strategies. She co-founded the Illinois Tourette Resource Network in 2014 and is honored that she can continue the legacy of providing TS support to the Illinois community.

How Teachers Can Help a Child With Tourettes

When you look at someone with Tourettes, all you see or hear are the tics. You don’t see the constant struggle, the constant commotion that is going on inside the person’s body. Although it might be easy to assume that when a person is not ticcing, they are okay or calm or not experiencing anything related to Tourettes, more often than not, that assumption would be entirely incorrect.

Here are a few tips on how teachers can help a child with Tourettestourettesteachermain

  1. Trust that if the person did not have an urge to tic, they would not be doing the tic. Know that although there might be some level of control for some kids some of the time, it is difficult to control and takes an inordinate amount of energy. The consequence of “not-ticcing” is often delayed tic-bursts, decreased concentration, lost instructional time and/or social time, and muscle soreness.  The consequence of ticcing is often embarrassment, shame, isolation, muscle soreness, decreased concentration, loss of instructional and/or social time.
  2. Ignore the tics. Don’t worry what the other kids will think or if they will become distracted. Be the role model. Keep on and so will the kids. They will get used to the noises just like you would get used to hearing the sound of a fire truck if you lived near a station or the smell of baked goods if you worked in a bakery.  If the noises bother you, just remember they bother the child a whole lot more…and he can’t walk away from himself.
  3. Remember that, as bad as the tics can be, they are usually just the tip of the iceberg. The common Tourette Syndorome (TS) co-morbid conditions are OCD, ADHD and Learning Disabilities.  Your student is battling, not only a body out of control, but some major disabilities that even adults have difficulty living with.  Remember this is a real, neurological disorder that the child did not ask for and does not want.
  4. Learn as much as you can about the disorder(s) and the child. Just because you knew one kid with Tourettes in the past does not mean that you know anything about the current student. Listen to the parents. Contact the child’s private clinicians. Ask questions. Above all, if the adults in the child’s life feel it is appropriate, talk to the child!  Let him know you are trying to understand, that you will do your best to protect him from the bullies, and that you care.  Let him know it’s okay to tic if he needs to and come up with safe places if he needs to leave the room.
  5. Does your student have behavioral issues? It’s possible that things you think are “bad behaviors” are manifestations of Tourettes. The shouting out? Tourettes. Doing what the teacher says NOT to do?  TS is a disorder of disinhibition. If the child hears “Don’t run” he will most likely feel compelled to run. If he knows he shouldn’t be saying certain words or doing certain things, the premonitory urge will center around those words or those actions and it will be extremely difficult, if not impossible, for him to control the urge.
  6. Work with administrators to schedule a teacher in-service for all the adults working with the child, including the related arts teachers, lunch monitors and bus drivers. TS does not go away when the child leaves your room. Children with TS need to know that there are in a safe place with understanding adults who will support them.
  7. With parent permission, set up a peer in-service. Have someone who is knowledgeable about TS speak to the students. There are organizations that have teens, young adults and adults who can provide this service.  This will help all the children, including the one with TS, feel less fearful and more comfortable with each other.

Click here for more information on what it’s like to live with Tourettes.

Meet-With-A-Neuropsychologist
About the Author: Shari was the 3rd person in IL to be diagnosed with Tourette Syndrome (1976). Her parents co-founded the IL TS chapter along with several others, including Joe Bliss. In 1978, while at a board meeting in her parent’s home, Mr. Bliss told Shari about his theory of premonitory urges and provided some tips and tricks on how to control the tics. It was the first time Shari felt “understood” and attributes much of her success to Mr. Bliss and his strategies. She co-founded the Illinois Tourette Resource Network in 2014 and is honored that she can continue the legacy of providing TS support to the Illinois community.

What It’s Like To Live With Tourettes

tourettes1mainThe diagnostic criteria for Tourette Disorder is so simple, so clear, so straightforward:

For a person to be diagnosed with TS, he or she must:

  • have two or more motor tics (for example, blinking or shrugging the shoulders) and at least one vocal tic (for example, humming, clearing the throat, or yelling out a word or phrase), although they might not always happen at the same time.
  • have had tics for at least a year. The tics can occur many times a day (usually in bouts) nearly every day, or off and on.
  • have tics that begin before he or she is 18 years of age.
  • have symptoms that are not due to taking medicine or other drugs or due to having another medical condition (for example, seizures, Huntington disease, or postviral encephalitis).

So simple, so clear, so straightforward.  So why is understanding the person with Tourette so complicated, so challenging, so confusing?  In large part because although it is easy to explain what it “is” it is exceptionally difficult to explain what it feels like to live with it.  Without that understanding, though, it would be incredibly difficult, if not impossible, for teachers and parents to effectively support children with TS.  And this is why…

When you look at someone with TS, all you see or hear, are the tics.  You don’t see the constant struggle, the constant commotion that is going on inside the person’s body.  Although it might be easy to assume that when a person is not ticcing, they are okay or calm or not experiencing anything related to TS, more often than not, that assumption would be entirely incorrect.

What causes Tourette tics?

Although once thought to be an “involuntary disorder”, there is a fair amount of peer-reviewed research that indicates people with TS have “triggers”, both internal and external. However, the triggers are ever-changing and inconsistent over time and even moment to moment. The initial documentation of a TS tic “trigger” was made by Joseph Bliss in 1980 (footnote) in the first-ever layman’s article published in the Archives of General Psychiatry.  His article describes how very slowly, over the years, he came to be aware of the faint signals that preceded a movement.  He described the sudden leap from impulse to movement as ”the moments before a sneeze explodes … almost as uncontrollable as a twitching nerve,” and concluded that the movements are actually voluntary: ”the intention is to relieve a sensation, as surely as the movement to scratch an itch is to relieve the itch.” Although a controversial concept in its time, it is now believed that in fact, most people with TS have “premonitory urges” in which they feel a sensation and then respond to it with a tic, which eliminates the sensation, but only for a fleeting moment when the urge begins again.

What are examples of triggers?

What are some of these triggers?  In addition to constantly changing, they vary person to person. Externally, they can be noises (loud noises but also softer noises like breathing and chewing), crowded places, certain people, unanticipated events, feeling as if someone is staring or talking about them, very cold weather, very hot weather, being physically over-stimulated, being physically under-stimulated, sitting for long (or even short) periods of time, being touched, certain foods, clothing, and smells, and so much more.  Internally, it can be hunger, over-eating, being tired, not having a specific task on which to focus energy, illness, injury and over-sensitivity to internal sensory input, to name just a few.  Although knowing what triggers a child’s tics can be helpful, for some children it is nearly impossible to figure out what they are, and some cannot be controlled regardless.  Therefore, as a start, it is essential for parents and teachers to gain a solid understanding of what Tourette feels like to the person living with it:  Joe Bliss’ concept of the Premonitory Urge.

What are Premonitory Urges?

Before a tic occurs, most people with TS feel a build-up of tension at a specific site within their bodies. Multiple “tension sites” can occur simultaneously.  This “tension” has been described in multiple ways such as an itch, a tickle, a punch, a storm, fullness, an ache, tingling, burning, and a feeling that something is not “just right.”  Once that feeling hits, the need to tic is extremely strong, analogous to holding in a sneeze or how it would feel if someone held their eyes wide and were told not to blink.  Although some people can control tics for periods of time, most people feel that if they don’t tic when they get the urge, that they will “burst” or get that feeling like they want to jump out of their skin. Even when tics are suppressed, eventually they need to be let out, creating a “tic storm” that can be painful, embarrassing, and create missed learning and/or social opportunities.

What is an example of a child with Tourette Syndrome?

So, let’s think about this in the context of a school setting.  Young Danny, aged 10, has Tourette. He was diagnosed at 5 and currently has no other diagnoses. However, over this past year, his parents are concerned about symptoms that look like anxiety and depression. They have also noticed that he is much more irritable when he gets home, than he has been in the past. He is a bright boy, with no learning disabilities but is not doing well in school.

Danny gets on the bus and sits with his friends. As they are talking, he feels an urge to lift his shoulders. It’s all he can think about and decides that a little shoulder movement isn’t going to cause attention to him so he does that tic and for a few moments he feels relief.  Then, he feels pressure building up in his arms and knows that if he tics, there is a chance he will punch the seat in front of him so instead of succumbing to the feeling, he focuses on tightening his arms, hoping that the feeling will go away. And it does until he exits the bus, but for the rest of the bus ride, all Danny can think about is squeezing his muscles as the tension build-up is getting stronger and stronger.  So much so that he has no available resources to talk to his friends.

As he exits the bus, he can no longer control the urge in his arms and is also aware of pressure building throughout his body. He stands still so he can fling out his arms, jerk back his head, and make a loud grunting noise.  It only takes a couple of seconds and when he is re-composed, he is acutely aware of 2 girls standing near the school door, laughing and pointing.  Danny feels a sinking feeling but is used to this, he ignores it, walks into the school, and starts to feel the premonitory urges build up once again.  As he heads down the hallway he wonders if there will be a lot of kids by his locker. He knows that if there are, it could set off his tics again if they get too close or touch him. If he’s touched on his left shoulder, he needs to touch his right shoulder. The closed in feeling will increase his urge to tic. Just the thought of this, combined with not knowing what to expect, starts to make him feel nervous. As he is reaching his locker, he sees only 2 boys there and feels some relief, but then all of a sudden he is aware of building tension in his mouth and throat and before he knows it he lets out a shriek. The kids turn and he feels humiliated. But, he knows if he doesn’t hurry up he’ll be one of the last people in the classroom, and walking into a crowded classroom increases his urge to tic, so he ignores the stares and continues to his locker.

Once in the classroom, Danny is continually assessing the situation.  It’s a constant effort of managing and mediating situations, both internal and external.  “Do I tic now so I can alleviate the pressure because if I don’t it will be more embarrassing later on?”.  “Should I go to the nurse and say I’m sick because I know that having to be in a quiet library will set off my tics?”.  “Will my teacher make me work with the kids who were just making fun of me? If so, I know I’ll be nervous and my tics will increase.  That will make  the whole day bad and it’s only 9:00 a.m.”   “If I go to the library I can try to hold in the tics but that’s not a good long-term strategy because then they’ll all come tumbling out in Social Studies. But maybe it’s worth it because the worst place to tic is in a quiet library.”  All the while, Danny is trying to listen to the teacher, trying to suppress some tics, but still ticcing, and then trying to ignore the stares and murmurs.  Now it’s 9:30 a.m. and he can’t wait to go home and take a hot bath because he knows his body is going to be in so much pain from ticcing and his brain is going to be so tired from trying to hold everything together.  “And my mother wonders why I’m so crabby when I get home,” he thinks to himself.

What does the teacher see?

Let’s look for a moment at the same situation from the teacher’s perspective.  She sees Danny walk into class seeming okay because he’s not ticcing. Of course she has no idea that already twice he’s been embarrassed by his tics, been laughed at, and that his arm and shoulder muscles are hurting from trying to contain the tic.  She notices a few tics but since they are slight shoulder and hand tics and a couple of eye blinks she again assumes he’s doing okay. Then, as she is talking about the group project she notices that Danny doesn’t seem to be listening.  She wonders why such a smart boy always seems to be daydreaming. She calls out his name and tells him to pay attention, which he does immediately.   Then, as they are lining up for library she commends him and tells him she is proud of him for controlling his tics.  “If only my teacher knew how much effort it takes, how stressed I am all the time thinking about it, and how tired and bad about myself I feel by the time I go home. If only she knew that when I say I have to go to the bathroom it’s really because I want to release my tics. If only she knew how much the comments and stares bother me. If only she knew that the reason I have trouble starting my work is because the pencil on my paper needs to feel “just right” or I’ll need to erase and start over again. If only she knew that the reason I stop working so much is because my socks don’t feel right and I have to adjust them until they do.  If only she knew.

As seen above, TS causes a constant struggle between the mind and the body.  Ticcing is no different than blinking or scratching an itch.  No one WANTS to tic, yet the urge becomes so strong it is virtually impossible to block it.  If the child controls the blinking, it might come out in squeaking. What’s better, what’s worse, when to do it?  The mind of a Touretter is constantly navigating a body that is out of control.  It’s annoying, discouraging and, at times, self-defeating. And, most bodies with Tourettes usually have additional disorders with which to contend.  So, Danny’s scenario was really quite “tame” as compared to most kids with TS. The tics are just the tip of the iceberg.  Add on ADHD, OCD, Depression, and/or Learning Disabilities and the “perfect storm” is created.  Put that child into a class where the teacher, understandably, has a difficult time knowing how Danny feels, alongside kids who either make fun of him, are scared of him, get annoyed with him, or “put up” with him at the risk of losing other friends who think Danny is “weird.”  Layer on top of that parents who are worried about their child, don’t feel like anyone else understands them, becomes alienated from friends and family, is frustrated by the notes home from school wondering why Danny can’t finish his homework (well, if he can’t finish it during the day he’s probably not going to be able to do it at home, either), frustrated with the lack of medical options, and feeling so guilty and so bad for their son who comes home every day with sore muscles, an exhausted mind, and feeling very beaten down.

Resources

  • Illinois Tourette Resource Network This group provides 3 support group meetings a month, monthly family activities, adult activities, online support, and workshops. They also provide speakers, teacher in-services and peer in-services.

Bliss, J. “Sensory experiences of Gilles de la Tourette syndrome.” Archives of General Psychiatry 1980; 37: 1343-1347.

About the Author: Shari was the 3rd person in IL to be diagnosed with Tourette Syndrome (1976). Her parents co-founded the IL TS chapter along with several others, including Joe Bliss. In 1978, while at a board meeting in her parent’s home, Mr. Bliss told Shari about his theory of premonitory urges and provided some tips and tricks on how to control the tics. It was the first time Shari felt “understood” and attributes much of her success to Mr. Bliss and his strategies. She co-founded the Illinois Tourette Resource Network in 2014 and is honored that she can continue the legacy of providing TS support to the Illinois community.

What Is Tourettes Syndrome

The Diagnostic and Statistical Manual, Fourth Edition, Text Revised (DSM-IV-TR), which is the diagnostic guide book published by the American tourettes childPsychiatric Association, indicates that Tourettes Syndrome is characterized by multiple motor tics and one, or more, vocal tic.  (APA XX).  Tics are sudden, repetitive motor movements or phonic productions (Leckman & Cohen, 1988).  These tics are considered to be either simple or complex.  Simple motor tics include eye blinking, eye movements, grimacing, and nose twitching and simple vocal tics include throat clearing, coughing, sniffling, spitting, barking, grunting, growling, hissing, and sucking.  Complex motor tics include facial gestures, biting, touching objects, thrusting arms, gestures with hands and complex vocal tics include phrases, speech atypicalities (unusual rhythms, tone, accents), and echoing words (Evans et. al., 1996).

Tics typically begin to occur when the child is between two to fourteen years old.  Initially, research has indicated that the first tics are simple motor tics.  The course of the expression of tics is difficult to predict but usually progresses from simple to complex tics (Leckman et. al., 1988).  Typically, vocal tics have a later age of onset and usually appear in children when they are approximately nine years old (Evans et. al., 1996).

Tourette’s Syndrome often coexists with other neurodevelopmental disorders and conditions, including Attention Deficit Hyperactivity Disorder, Obsessive Compulsive Disorder, and Learning Disorders.  As a result, it is always important to attain a comprehensive evaluation of a child’s cognitive, academic, attentional, and social/emotional functioning in order to ensure that all possible areas of concern are addressed through academic and social interventions.

The Centers for Disease Control and Prevention reported that current prevalence rates of Tourette’s Syndrome are approximately 3 out of every 1,000 children between the ages of six and seventeen living in the United States (CDC, 2010).

Treatment of Tourette’s Syndrome needs to focus on four factors:  working with the child to develop coping strategies, parent and family education, school accommodations, and peer education.  It is vital that the child receive specific intervention and strategies to help develop strategies to deal with anxiety associated with a tic disorder.  Parents and family members need to be educated about the disorder, as well as the course and treatment of the condition.  Teachers and faculty need to be educated about the condition in order to ensure that any academic staff member is aware that possible negative behaviors are tics as opposed to volitional oppositional and defiant behaviors.  In addition, peers need to be educated about tics in order to ensure social acceptance.  If a child with Tourette’s Syndrome continues to exhibit debilitating tics after the above four interventions have been addressed, it would be warranted that he or she have a consultation with a pediatric neurologist in order to determine if he or she would benefit from pharmacological intervention.

If you suspect that your child may be suffering from Tourette’s Syndrome, it would be warranted that a comprehensive evaluation take place in order to help ascertain the current level of functioning as well as any possible co-existing conditions such as learning disorders, attention deficit hyperactivity disorder, and social/emotional concerns.

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