Expect to Be Flexible
Adventures in Parenting: Tourette’s Uncovered
Jonah Hinds, Marques Seme, Jaylen Arnold, Colin Shoff
Regular airtime: Monday, 9pm ET
US: 13 Sep 2010
The mission statement of Discovery Health’s Adventures in Parenting Week is to help viewers understand the “remarkable parenting challenges” facing some families. The first episode, airing 13 September, offers the stories of four boys living with Tourette’s Syndrome. Composed of Discovery-shot footage, home video, and interviews with the boys, their parents, their peers, and medical professionals, Tourette’s Uncovered, shows how families must adapt to the needs of children suffering from a constantly changing medical condition, as it also challenges stereotypes about Tourette’s.
Each boy tells his own story—describing his tics, his social world, and the challenges he faces—alongside perspectives from his parents and doctors. This structure provides multiple contexts for the complicated and sometimes alarming behavior produced by Tourette’s. It also helps viewers to question the stigma attached to Tourette’s Syndrome. Jayden, 9, Marques, 14, Jonah, 11, and Colin, 17, all speak coherently and complexly about their awareness of how they appear in contrast to “normal” boys, and their subsequent frustrations. Shortly after his introduction, Marques says, “I hardly go for a day without people staring at me. I can’t remember the last day I walked outside without people giving me nasty looks.”
The boys’ difficulties are paralleled by those of their mothers and fathers, as, according to the program, living with Tourette’s is often a collaborative effort for families. Marques explains that his Tourette’s interferes with his ability to attend school, as he has been bullied in ways designed to trigger his tics. His mother Cheryl Tellis reveals that the need to provide Marques with a stable learning environment (through home schooling) required a complete change in their lives and standard of living. The Tellis’ story demonstrates how the condition expands the range of parenting duties, from providing an education to seeking an accurate diagnosis. It also shows how their efforts and sacrifices are increased because of the ways others respond to Tourette’s.
Tourette’s Uncovered engages in a comprehensive discussion of the lives the of the younger three boys, depicting them in their homes, at school, in church, and engaged in extracurricular activities. Despite socio-economic or geographic differences, these stories fit well together. But when the focus turns to Colin and his mother Dorene, Tourette’s Uncovered takes up the specific dilemmas facing an older teenager with Tourette’s. Facing problems in dating, feeling independent, and dealing with rage episodes, Colin introduces a different set of parenting and family questions, a set that the documentary doesn’t pursue, but instead leaves unresolved.
That said, the program opens the door to a broader conversation about a condition that is often mocked by others and challenges those who have it. It also shows that there is no one right way to parent a child with Tourette’s. Each set of parents makes the same basic point—their children’s obstacles today may not be what they have to deal with tomorrow. And this uncertainty means they have to be flexible.
While “adventure” seems somewhat inaccurate to describe these parents’ experiences, this introduction to Adventures in Parenting Week offers families who are well-educated in both Tourette’s as a social and medical condition, the ways it affects their lives and expectations. Their openness about a situation that is so often feared or repressed reveals as well that there is no single right way to parent a child with Tourette’s.