Recently, 12-year-old Jacob found the courage to share a very personal, very honest video through which he opened our eyes to the world of Tourette’s. Featured on his mother Sara’s Facebook page, and now The Bully Project’s Facebook feed as well, Jacob’s message has been viewed over 25,000 times. A silent video—through which Jacob communicates solely through words on paper—has spoken volumes.
Tourette’s is a tic disorder that is usually diagnosed in early childhood or adolescence. The disorder is relatively common, with as many as 1 out of every 160 children showing signs of TS, yet children plagued with this condition are often ostracized or ridiculed. Tics can be awkward and confusing, causing those around the person with TS to be uncomfortable. Childhood is already painfully nerve-wracking, and kids with Tourette’s have far greater obstacles to overcome on a daily basis.
But thanks to Jacob, a brave 12-year-old boy who chose to educate others rather than hide in fear and shame, adolescents (and adults) can have a better understanding of this confusing condition and are now better equipped in handling themselves when in the presence of someone with tics.
Although Jacob began showing signs of TS at three, he was not officially diagnosed until age seven. Jacob’s most common tics are facial movements and mouth noises, such as humming and helicopter-like noises. His mother Sara explains that one of the most difficult aspects of Tourette’s is that tics change and evolve. It seems that once Jacob has a handle on his tics, a new one emerges. As a younger child, his tics involved saying “boop” over and over as well as touching his face with everything that touched his hands.
As with most Tourette’s patients, Jacob’s tics worsen in stressful situations—such as change in routine (like the beginning and end of the school year) or societal pressures (when other children respond negatively, for example). That’s one of the many topics Jacob addresses in his video—that he cannot just “stop” even if he knows he is annoying or disturbing others. In fact, the attempt at controlling or stopping a tic will often intensify it.
Tourette’s has affected all aspects of Jacob’s life, from academics, to friendships, and even to sports. A lover of baseball, Jacob has recently started focusing more on swimming. Team sports can be extremely challenging for a child having tics during a game, as this provides a distraction, and Jacob worries he’s letting his team down. Swimming, on the other hand, is an individualized sport. Jacob only needs to worry about himself and can work on his own strengths and weaknesses without the pressure of teammates looking on.
Despite having Tourette’s, Jacob is a typical 12-year-old boy. He loves Star Wars. He roots for the Mets and the Jets. He loves to read James Patterson’s middle school books. He enjoys riding his bike and hanging out with kids his own age.
When asked why Jacob chose to create this video that has garnered so much attention, he said he wanted to “educate his classmates on Tourette’s, in the hopes that if they understood why he was behaving the way he does and having tics that he cannot control, that they would pay less attention to his tics and more attention to who he is as a person.” And maybe then they would realize that “he is just like them even when he tics.”
Set to the very fitting background music of “Won’t Back Down” by Tom Petty, Jacob’s video does just that. He holds up signs that describe what living with Tourette’s is like—frustrating, feels like everyone is looking at me, people think I’m weird. I do not tic because I want to. Actually I don’t want to.
But I’m still just like you. You can be my friend.
Jacob’s courage is inspiring and will hopefully generate conversations between parents, teachers, and kids about how we treat those who are different. What a true friend looks like. What compassion and understanding mean. That we all have strengths and challenges to overcome, but that we all have something beautiful to offer this world.
I have two boys. They also love Star Wars. We are Royals fans, and we beat your Mets in the World Series last year—sorry, Jacob! But I’d be honored to have my boys ride bikes with you and call you their friend.