The township recently presented a proclamation to the Baldwins – a family of Mantua residents – recognizing May 15 to June 15 as Tourette Syndrome Awareness Month, an attempt to educate residents about the disorder.
“We are so thankful to Mayor (Robert) Zimmerman and the township committee for helping us spread awareness every year,” said Carolyn Baldwin. “Mayor Zimmerman and (the) township committee are always so receptive and willing to help us spread awareness.”
Baldwin has three kids – Anna, 24, Sarah, 23, and Eric, 20 – with Tourette’s.
While she and her husband Scott do not have it, several of her maternal relatives do.
“We were devastated when our son was diagnosed with it,” Carolyn recalled. “Even though he is the youngest, his tics were the most obvious, and therefore he was the first diagnosed. We knew nothing about TS except for what we had seen on television and in the media.
“We believed our children would struggle their whole lives and were grieving the future we felt they would never have,” she added. “My sister, who also has a child with TS, recommended the movie, I Have Tourette’s but Tourette’s Doesn’t Have Me. After watching it, we realized the happiest child in the movie was the one educating everyone about (the syndrome), so we decided to do the same.”
Just like in the movie, Baldwin’s oldest daughter, Anna, decided to educate others about the disorder, including classmates. That eventually led the family to the New Jersey Center for Tourette Syndrome (NJCTS), an organization Baldwin referred to as a “game changer.”
“We were able to meet other families who were going through the same thing we were and we were given tools we needed to help our children be successful,” Carolyn noted. “All of our children became youth advocates with (the) NJCTS.
“They learned how to go into schools and (on) hospital grounds to educate others about TS,” she added. “They also met with most of their elected officials to explain their struggles and to spread awareness. This gave our kids control of how others perceive them.”
The most common sign of Tourette syndrome are tics that can’t be controlled, including repeated shoulder shrugs and blinking eyes, unusual sounds or the uncharacteristic use of expletives.
But the Baldwin kids did not let the disorder control them, something for which their mother credits the Mantua and Clearview school districts and the NJCTS.
“Our children were lucky to go through Mantua Township and Clearview schools, where they had a lot of support from the teachers and staff,” Baldwin explained. “That along with the help and support from NJCTS, our children thrived.”
She noted that all three of her offspring with the syndrome became public speakers. Two created comic books about the disorder and one still gives presentations to schools.
“While they had struggles over the years, TS did not hold them back,” Carolyn emphasized. “Our daughter Anna is a teacher. Sarah is studying to be a teacher, and Eric is studying astrophysics.
“Educating and spreading awareness benefits everyone and is something our whole family is passionate about.”