6 Things I've Learned as the Parent of a Child With Tourette Syndrome

My son has Tourette syndrome (TS), a neurobehavioral movement disorder causing motor movements, or tics, he cannot control.  And that’s just what is obviously visible on the outside. Many children with TS deal with obsessive-compulsive disorder, attention deficit hyperactivity disorder, and various learning disabilities. The Tourette Syndrome Association of Texas estimates up to one in 33 children have TS in some form. Even so, it’s widely misunderstood, and we have much more to learn about what causes TS and treatments.

young boy swimming in the waves at the beach
Leslie’s son.

I would never try to speak for my son about what it feels like to live with TS, but I can tell you, after years of processing this diagnosis, what Tourette syndrome has taught me. Maybe all parents could learn something from this part of my story.

1. Most of the time it’s best to “call it like it is.”

Be as honest with your children as you can. If they learn mom or dad has rough dark days, too, they may be better able to manage theirs. They will also more likely want to talk to you about the difficult moments. I believe we should all learn to laugh at our personal challenges, because they don’t define us. However, sometimes those challenges, like Tourette syndrome, can make us want to throw up our hands, scream and cry. It’s not easy. Let’s just call it like it is.

2. “Let go and let God.”

Sometimes being “in control” means letting go. If we as parents constantly strive to show our children perfectly managed households and expect perfect grades and perfect behavior, we may set them up to disappoint us and themselves. We cannot always control the cards we are dealt in life. If we let go, we realize we really don’t need control in the first place.

3. “Being still” is sometimes impossible, but that’s OK.

Some people can “be still” better than others. Telling a child with TS to “be still” is insulting, I feel, and may do damage to their self-esteem. They have no control over their motor or vocal tics. If you think about it, all children were not made to “be still.” They were made to move and play and grow and learn. Let’s let them be children.

4. Remember we all learn differently and at a different pace.

It’s easy to say this phrase, but not so easy to embrace it when we live in a world of developmental benchmarks and educational standardized tests. This mindset has been difficult for me to accept, but on days when I truly am at peace with it, it brings a great deal of freedom.

5. Work hard to control the stress in your household.

We all know how even small amounts of stress overtime can make us sick. Physically sick. Stress and anxiety can send a child with TS into overdrive, triggering tics that stick around for a while. I have seemed to thrive on stress at times in my life, and worn the amount of stress I can handle like a badge of honor. I believe teaching our children ways to manage stress will make us all healthier and happier.

6. Help your children discover their gifts. 

I figure this is my most important role as a parent. We should work with our children to show them how to use their gifts and talents. I often get so focused on trying to fix my children’s challenges, I miss the chances to help them discover their strengths. The world may make it difficult to see a child’s gifts, but I believe we should ask God for patience in waiting to see those gifts revealed. As my son grows and uncovers his passions and purpose, I’ll be the one watching from the wings with a huge smile on my face.

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