New Documentary “Tourette’s Uncovered” to Premiere Monday, September 13 at 9:00 pm on Discovery Health Channel
September 3, 2010 by Leslie E. Packer PhD
Filed under Event, Featured
New Documentary “Tourette’s Uncovered” to Premiere Monday, September 13 at 9:00 pm on Discovery Health Channel
From the national Tourette Syndrome Association:
TOURETTES UNCOVERED profiles four different children living with the burden and stigma of Tourette Syndrome. In this world-premiere hour-long special, Discovery Health follows Jaylen, Marques, Jonah and Colin and their families as they learn to cope with this mysterious and often misunderstood condition.
Jaylen is an articulate and funny 9-year-old from Florida, who has a moderate Tourette’s as well as OCD. Some of his common vocal and motor tics include making “barking” noises and facial grimaces, beating his arms against his torso, and moving his body uncontrollably while in bed at night. After trying many different medications to no effect, Jaylen’s mom, Robin, has decided to treat his disorder homeopathically. Because of his Tourette’s, Jaylen was always harshly bullied at school. Though those experiences made him anxious and overwhelmed, he has decided to use them to educate the public, and will soon give an anti-bullying speech to over one hundred kids. Partnered with Hollywood actor Dash Mihok, who also lives with Tourette’s.
Marques’ Tourette Syndrome is characterized by both motor and vocal tics that are often severe. He suffers from coprolalia, a rare tic that affects less than 10 percent of people with Tourette’s. Commonly known as “the cursing tic,” coprolalia causes sufferers to shout curse words uncontrollably. Though Marques, 14, takes medication and practices Habit Reversal Therapy, his coprolalia can still have embarrassing consequences in public settings. Like many Tourette’s sufferers, Marques also has OCD and ADHD – two disorders that are often linked to Tourette’s for reasons doctors don’t fully understand. Marques lives together his mom, who was forced to quit her job in order to care for her son as his Tourette’s worsened. Cheryl removed Marques from New York public school because he was being bullied, and the two had to move into low-income housing. Though Marques is currently home-schooled, he hopes to be admitted to a public charter school that will accommodate his disability.
Jonah, 11, suffers from a debilitating case of Tourette Syndrome. His severe motor tics- such as shaking on the floor or running unexpectedly – mean that he must be monitored constantly so that he does not hurt himself. Despite his tics, he still leads a life full of activities: he plays sports, participates in youth groups, creates art and fights with his brother. His peers and classmates have learned to accept him and help him when he needs it. Jonah’s parents, Beth and Mike, have tried a variety of therapies and medications to alleviate Jonah’s tics, but nothing has worked. As a last resort, Jonah will soon undergo the risky Deep Brain Stimulation surgery – a promising but currently investigational surgery for Tourette Syndrome that involves implanting electrodes deep into Jonah’s brain.
Colin’s Tourette’s manifests itself in both seen and unseen ways. His most visually striking tic is his near-constant head shake, which most people mistake as a behavioral problem. But his Tourette’s also causes uncontrollable aggression that can often lead to “rage attacks,” which have wrought destruction in the house he shares with his mom, Dorene. Colin, 17, plays guitar and writes his own songs, often performing them at open mic nights. For Colin, music is both an outlet and a way to educate people about his disorder. He currently must rely on his mom to drive him everywhere, but like all teenagers, he craves independence and hopes that he may soon be able to move out on his own.
Check your local cable provider for the Discovery Health Channel. “Tourette’s Uncovered” will also be replayed at 11:00 pm on September 13 and again on September 15 at 10:00 pm. You can check the TSA Facebook page for updates on future airings on Discovery Health and The Learning Channel (TLC) as well.
I am glad to see a documentary that includes some more severe cases to demonstrate the spectrum. You can view two short excerpts from the upcoming special on Discovery Health Channel.
The lady from New York City who had to quite her job in order to take care of her son and move into an apartment and then take her son out of the school because of the fiendish bullying…she is a lady I admire so much! What a wonderful lady. Am so sorry for what the mother and her child, who obviously is a very intelliet person and well broguth up!, what they are going through.
I actually was once again EXTREMELY frustrated with the media’s portrayal of TS. I completely and 100% understand that some kids have extreme tics. My heart goes out to these families. I, in fact, cried my way through the whole thing. The bullying, the emotional upheaval, the frustration… all of it was beyond crushing. But… but… I’m irritated that no media ever shows the milder cases. My son, for example, has mild TS. I know he is very lucky, but as it turns out, so are a majority of TS diagnosed people. It often flies under the radar. This is wonderful for them, but for the parents of a newly diagnosed child, it can be freakishly scary. With the majority of sites showoing only the extreme cases, no wonder people are afraid to talk about TS or admit their kids have it. They think everyone is going to be like these poor children on the Discovery special. This simply is not the case.
Your site, by the way, is wonderful and I appreciate all you have done to educate people.
It seems that there is no pleasing everyone in any one documentary or piece. A lot of people I know criticized the HBO special “I Have Tourette’s” because they felt it over-focused on milder cases and middle class kids, etc. Have you seen that one, and if so, would that be more helpful to you in educating family, friends, and your son’s school?
I blush to admit that I haven’t seen the new documentary yet. After blogging about it, I forgot to put it in my own calendar, so I will have to wait until this Saturday night when it re-runs to watch it.
Thanks for the kind words about my site. It’s hard to believe that it’s about 16 years now that I’ve been on the Internet in one form or another trying to get information “out there.” I hope you’ll come back and contribute more.