Tips for Parents

Parents and Tourette

As primary caregivers, parents of a child or teen diagnosed with Tourette and Tic Disorders can help the child cope with the disorder and grow to become a successful and happy adult.

What is My Child Experiencing?

In qualitative interviews, young people with TS report that being stigmatized by peers is hurtful and impacts their quality of life. Parents, teachers and clinicians need to be aware of the impact of negative social experiences.

Parents’ Roles

As a parent whose child has Tourette Syndrome, you are often required to wear many hats – educational advocate, service coordinator, and emotional ally.
Educational Advocate
To make sure your child is receiving appropriate school services, it’s important to address any difficulties you notice that may be related to school behavior, performance, and socialization. These can include a negative change in attitude about school, a decline in grades, reports of bullying, an increase in symptoms, or increased frustration.

Parents should, as the coordinator of the educational team, make sure their child is getting effective:

Accommodation (such as a private space for testing)
Support (such as use of a computer to type answers to a test instead of writing them)
Understanding (such as an informational program about TS for students and staff)
Service Coordinator
It’s important that parents work to obtain all the services their child needs to make life productive and satisfying. In addition to appropriate educational services, a child with TS might benefit from psychological counseling, which can help with issues of self-esteem, social skills, and even habit reversal to help control some TS symptoms.

Although most children with TS do not require medication, sometimes the severity of symptoms and the co-occurring conditions warrant their use. Since Tourette Syndrome is a complex condition and the associated symptoms can be difficult to manage, it’s important for parents to work with a physician familiar with treating TS. Occupational therapy may also help with some specific neurological components of TS, such as visual-motor coordination.

Emotional Ally

Clearly, the reaction of others to the symptoms of TS can have a tremendous impact on a child’s self-esteem and self-confidence. It’s critical that parents help their child develop a healthy self-esteem, learn to successfully navigate social interactions, and accomplish important goals.

In order to help their child with TS, parents must deal with their own responses to the diagnosis, as well as the response of the rest of the family. These responses may range from denial and guilt to anger, fear, and isolation. By reacting to these responses with accurate information and effective support, parents and, indeed, the child’s entire family, can become powerful allies with the child with TS.

“Quality of Life Among Youth with Tourette Syndrome From the Youth’s Own Perspective”