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 parents can help a child with Tourettes
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
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.