Raising a Child with Tourette Syndrome: One Family's Story

Making Adjustments

Many families of children with Tourette syndrome don't live close to specialists with experience treating the condition. For several years after his initial diagnosis, Jaylen's family had to drive an hour and a half one way in order to see a specialist, despite living in a heavily populated county. Eventually, a specialist happened to move closer to their home, putting the care Jaylen needed within closer reach.

Though familiar with the syndrome, many doctors and other health care workers have never actually had contact with a patient with Tourette syndrome. In fact, when Jaylen goes to various hospitals for testing and treatment, he often becomes something of a minor celebrity among the doctors and nurses throughout the hospital.

As unique as Jaylen's situation is, his parents must balance his needs with those of his younger sister, who doesn't have Tourette syndrome. Jaylen's parents make an extra effort to ensure she receives as much individual attention as possible, so that her life doesn't occur in the background of her older brother's medical condition. Balancing competing needs of siblings of children with Tourette syndrome is a difficult task for any family, but in time, these adjustments become part of the fabric of daily life.

Like any younger sibling, she looks up to Jaylen and basks in the attention he gives her (even occasionally mimicking his tics, as any younger sibling copies the actions of an older sibling). But unlike most other younger siblings, she's had to adapt her life in certain ways because of Jaylen's needs. She doesn't tap her foot on the floor to the beat of a song, knowing it could set off his tics or OCD habits, and she knows that if she puts her hand on a surface or writes with chalk on a chalkboard, he will be compelled to wipe it.

Next, we'll talk about how children with the condition are often confronted with teasing, how it affects their condition, and how it can be dealt with.

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