8 Things Parents Of Kids With Tourette's Syndrome Want You To Know

05/20/2015 11:22 am ET | Updated May 20, 2015

May 15 to June 15 marks National Tourette Syndrome Awareness Month -- a time to raise awareness for what the Tourette Syndrome Association (TSA) calls a "baffling disorder."

Tourette's syndrome is a neurological disorder that's accompanied by involuntary movements, or tics, which are "frequent, repetitive and rapid." That doesn't mean, however, that people with Tourette's are constantly shouting -- despite what that common stereotype might have you believe.

To get a fuller picture, we spoke to a few parents who are leaders of various chapters of the Tourette Association and broke down what parents of children with TS want you to know about their child's condition.

1. Tourette's syndrome is not uncommon.
According to the Centers for Disease Control and Prevention, about 1 in every 360 children between the ages of 6 and 17 has a Tourette's syndrome diagnosis. Most of these cases are classified as mild or moderate.

2. For the most part, people with Tourette's syndrome don't shout obscenities.
Media portrayals of TS tend to depict the disorder as some sort of cursing disease -- think: Amy Poehler's character in "Deuce Bigalow: Male Gigolo." In reality, most researchers agree that only about 10 to 15 percent of people with TS uncontrollably curse. But the stereotype has been hard to kick.

"When my son was first diagnosed with Tourette's, the first thing I said was, 'But he doesn't swear,'" Susan Breakie, a chapter leader for the Tourette Syndrome Association of Delaware and the mother of a son with TS, told The Huffington Post. "That's the way I had stigmatized it because of things that I had seen in movies or TV shows."

3. In fact, not all kids with Tourette's syndrome have the same symptoms.
Tics, or "repetitive, stereotyped, involuntary movements and vocalizations," can take all kinds of forms. Eye blinking, facial grimacing, shoulder shrugging, head or shoulder jerking, repetitive throat-clearing, sniffing and grunting sounds are just a few listed by the National Institute of Neurological Disorders and Stroke.

"You may know one person with Tourette's syndrome and then meet another one and he or she is completely different," Michelle Guyton, a member of the Board of Directors for the Tourette Syndrome Association of Greater Washington and the mother of a son with TS, told The Huffington Post. "The best way for people to understand Tourette's syndrome is to actually spend time with someone with Tourette's syndrome."

Something else to keep in mind, said Sheryl Kadmon, the Executive Director of Tourette Syndrome Association of Texas and a mother of two sons with TS, is that these symptoms often wax and wane with no predictability.

4. Oftentimes, children with Tourette's syndrome are also dealing with mental health conditions.
The CDC reports that 86 percent of people with TS have a concurrent mental health, behavioral or developmental condition, like ADHD (63 percent) or anxiety (49 percent). More than a third also have obsessive-compulsive disorder. That said, TS doesn't have to be a grim diagnosis.

"It is very difficult for these kids to do well in school, but if we can intervene and tell the school what they need to do, these kids will do really well," Kadmon said. "In the end, most all of them have an excellent prognosis."

5. People with Tourette's syndrome aren't doing these things for attention -- they actually can't help it.
TS is a neurological disorder, so all of the tics are 100 percent involuntary. According to Breakie, people in her support groups have experienced peers telling them to "stop that" or even teachers sending them out of the classroom for "distracting other students."

"People don't understand that nobody wants to do this," Breakie said. "Their brain is telling them to do this. It’s no more controllable than holding back a sneeze or any other kind of urge like that."

6. Tourette's syndrome isn't an intellectual disability.
Kadmon said that, oftentimes, people assume that a child with TS has an intellectual disability, which is only the case for 12 percent -- people with TS generally have "normal intellectual functioning," according to Johns Hopkins Medicine.

"We have a population of very intellectually high-functioning kids who may have difficulty demonstrating that ability because their body makes movement and noises they can't control," Kadmon said.

7. It isn't helpful if a teacher stops everything when a child experiences tics.
The best thing for teachers do when a kid with TS is tapping or making a noise in the classroom is to just accept it and keep teaching, said Breakie. If a teacher appears understanding, quite often the rest of the class will follow suit.

"Teachers don't stop everything just because someone comes into school with a bad cold and they're coughing or sneezing," she said. "So nothing should really stop if a child is clearing his throat all of the time or is jiggling his foot."

The same goes for the parents of classmates, Breakie added.

"If the parent understands, it's going to be passed down to their kids," she said. "They could say, 'That person has Tourette's syndrome -- it's OK. They can't help how they move, but they're still really nice people.'"

8. Kids with Tourette's syndrome aren't any different than other kids.
"Really, they're just like other kids," Guyton said. "My boys in particular like for people to ask them about it. They would rather educate people and tell them what’s going on than have people avoid them or make judgements about them without taking the time to know them. It's about having an open dialogue and an understanding that these kids are wonderful, great, smart, talented little people that need to be included."

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