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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.