How to Help My Child Live With Tourette Syndrome
From first tics, through diagnosis and through adulthood, learning to live with Tourette syndrome is a process that happens over time. With most individuals, tics are first noticed during childhood. Parents and other adults can have a major role in providing a supportive environment that will help a child learn to live with tics. A parent’s ability to adjust to the reality of the diagnosis can be important for the child’s adjustment. The most important thing a parent can do is to focus on the whole child. The emergence of tics has not dramatically changed a child’s personality, skills, joys or interests. Define the child by these core factors. Consider tics as a factor that affects but does not define a child.
Another component of the adjustment process is self-education. The more you know as a parent, the more you can be helpful to your child (see What Might Happen With Tics Over Time). The initial education process need not be for parents alone, but can involve the whole family, especially the child with tics. Open conversations about tics and the reality of Tourette syndrome is a great way to help everyone in the family to increase acceptance for the challenges that may arise. Children with TS can benefit from being provided with information about tics and TS in age-appropriate ways that are relevant to their symptoms. Beyond general discussions with parents about tics, a child can benefit from TS-focused literature and play. For example, perhaps the child can have a toy or a doll that also has tics; the toy’s tics can be part of parent-influenced pretend play.
Another potential component of the adjustment process is an advocacy plan that responds to a world that is dangerously misinformed about TS. Painful stigma follows ignorant viewpoints based on television and movies' attempts to be humorous by misrepresenting TS as a disorder that consists only of more extreme (and less common) tics. Parents and individuals with TS can benefit from practiced confidence about how to manage the collision of tics and their social world. They are faced with the task of deciding who to tell, when to tell and what to tell. As a psychologist, I work to support whatever decisions families make on these difficult matters. Within this role, I often encourage that some level of disclosure about tics can be helpful for many reasons. First, I believe that the goal of acceptance of tics can be better achieved through advocacy then through secrecy. Families who raise voices of support for their member with TS, and individuals with TS everywhere, find the diagnosis to be less of a burden and more of a call to action. Second, I think that when the general public is provided with accurate information about tics and TS, they are less likely to make stigmatizing judgments. For example, when a school classroom has been well informed about the realities of their classmate's TS diagnosis, they are less likely to tease or question noticeable tics. Moreover, when tics in the classroom are understood, they will often just fade into the background and become less distracting for everyone. If a child with tics does not have to worry about if classmates are noticing and if so, what are they thinking, he will be better able to stay focused on work and be less concerned about trying to suppress tics. Third, I think that parents who are advocates, educating others about TS early on, are providing a good model for their child to emulate when she is older and can apply her own self-advocacy skills. This can be especially important considering that many children experience an increasing severity of tic symptoms from early childhood throughout early adolescence (see What Might Happen with Tics Over Time).
A final, important component is support and/or counseling for both parents and individuals with TS. Support can take the form of opening up about the emotional difficulties to family and friends. It can take the form of joining a local chapter of the Tourette Syndrome Association or finding an online support group. For parents, support involves having a place to voice the stressors and frustrations with TS and the challenges that can come with it. If parents can take care of their own emotions, they are in a better place to support the emotional experience of their child. When the available support does not seem like enough for individuals with TS or for their family members, supportive counseling is another option to consider. Even if there is no local expert on TS treatment strategies (e.g. Habit Reversal), it can be helpful to have someone to go to for consistent support.