Baldwin family renews support for Tourette Syndrome

A Mantua family has been building a network of families to support and advocate for Tourette Syndrome after the three children were diagnosed nearly 10 years ago.

Deputy Mayor Robert Zimmerman, left, presents a proclamation to the Baldwin family recognizing June 4 as Tourette Syndrome Awareness Day. Standing next to him is Anna, Scott, Sarah, Eric and Carolyn. Anna, Sarah and Eric all have Tourette Syndrome. (Krystal Nurse/The Sun).

The Baldwin family is like any other family in Mantua. They go to school, college, work and provide for each other. What sets them apart, which they embrace, is that the three children – Anna, Sarah and Eric – have Tourette Syndrome.

At the Mantua Township Committee meeting, the Baldwins were recognized, once again, for their efforts to spread awareness about Tourette Syndrome in the township and surrounding communities.

Tourette Syndrome is a neurological disorder characterized by involuntary physical and phonic tics. According to the New Jersey Center for Tourettes, more than 200,000 Americans have Tourettes.

The reason we do this every year is to get the word out there,” Carolyn Baldwin said at the meeting. “We want you to put a face to Tourette Syndrome. When you hear it in the news or hear someone talk about it, this is what it looks like.

Anna, rising junior at Stockton University majoring in special education, Sarah, a rising sophomore at Syracuse University as an undeclared major, and Eric, a rising junior at Clearview Regional High School, will often speak to the Mantua and Clearview districts, as well as legislators and other families about what it’s like to have Tourette Syndrome.

Eric was diagnosed when he was 5, Sarah was diagnosed when she was 12, and Anna was diagnosed when she was going into sixth grade. Sarah added her Tourettes came in the form of both the vocal and physical tics, but also anxiety.

When Anna was diagnosed, at first they gave us a hard time with [accommodations] because it was misunderstood,” Carolyn said. “They felt because her IQ was so high, she wasn’t struggling yet and she went from zero to 60 with pretty violent head-shaking, punching herself on her shoulders.”

The three had accommodations ranging from sitting in the back of the class to not distract other students with their tics, to being given more time, or a personal proctor, on exams, to being provided less classwork, but same amount of credit, to complete.

“What they do is if someone in class has 100 math problems, they get graded on 100, [Eric] does 50 problems, so he gets graded on that and they’re worth more points,” Carolyn said. She added when he was in Mantua’s district, he was provided with a speech-to-text device to use (Eric added he has dysgraphia, a learning disability where a student has difficultly writing).

In college, Anna said she’s not registered with her college’s office of disability services, but Sarah is, and the advisor helps her advocate and get accommodations, when needed.

The neurological disorder, however, comes with stigmas.

People assume we all curse,” Anna said. “When they hear ‘Tourettes,’ they assume you’re going to be spitting out curse words all of the time.

It’s the sensationalized part of it,” Sarah said. “Of course, it’s the taboo part of it.

The cursing called coprolalia affects less than 10 percent of all people who have Tourettes according to Tourette Association of America and NJCTS, an organization the family is deeply invested in.

[The foundation] was started by a mom (Faith W. Rice) who took her son to a neurologist and they said ‘take him home and love him,’” Carolyn said. “She would never let another mother feel that way. She started this out of her garage and she’s still the director.”

Sarah added they also get stigmatized with the accommodations granted to them where some people assume they’re “getting special treatment,” but the three still struggle and it levels the “playing field” for them.

I’ve found that if people hear that I have Tourette Syndrome, before they meet me, they don’t expect me to be me,” Anna added. She went on to say people expect them to be “off” or to be awkward.

People also expect people with Tourettes to have lower IQs, but people with Tourettes have higher IQs,” Anna said. “They usually have higher IQs and are better at learning other languages. The pick up on them quickly.

All three of the Baldwin children said they’ve spoken to pediatricians and other doctors to put a face to Tourettes and let them know how the disorder affects someone in their daily lives. Anna said there are days when she won’t tic, which can make it difficult for a doctor to diagnose a patient who has it.

It’s one thing to know everything on a sheet of paper, and completely different to see someone like us with it,” Sarah said.

They took ownership of something they have no control over, and they controlled how people perceive them,” Carolyn said. “Each one of them has their own individual voice and they all present differently.”

The more people know about it, the easier it is for us,” Eric said. “People can ignore the tics and that makes it so much better. If people don’t know about it, they’ll usually ask if we’re OK or what’s going and it’s not fun.”

Since the children’s diagnosis, the family said advancements have been made to reduce the number of years it takes to be diagnosed, and they’re partnered with Rutgers and Yale universities, through NJCTS, to have a repository of gene samples to zero in on a possible cause of the neurological disorder.

The Baldwin’s said they bring together other families in the area to discuss with them what it’s like to have Tourettes, and to put the parents’ and children’s minds at ease knowing there’s resources available and a reliable network to lean on.

They see that it’s not a life sentence and their life isn’t over,” said Carolyn. “They’re going to have to find ways around certain obstacles, but they can still get to their goal. They’ve learned how to go around the mountain or over because they can’t go through.