Horseback riding, playing soccer and basketball, singing and strumming his guitar are activities that 15-year-old Adam Fishbein, of Elkins Park, enjoys in his spare time. However, Adam recently added a unique activity to his résumé of hobbies. He was invited to be an official youth ambassador for the Tourette Syndrome Association.
Adam was one of 47 students from across the country who was selected to participate in TSA’s Youth Ambassador Program in March. The program trains teenagers with TS between the ages of 13 and 17 years old to go into local schools, churches and community centers to educate others about TS, while teaching understanding, sensitivity and tolerance for those living with the condition, according toTSA.org.
“I want to make a difference for other people that have Tourette’s and to everyone,” Adam said March 31.
TS is described as a neurological disorder that usually surfaces in early childhood or adolescence and involves involuntary movements, known as tics of the body, that tend to be frequent, repetitive and rapid, TSA.org stated.
According to a 2007 study conducted by the Centers for Disease Control and Prevention, three of every 1,000 children between the ages of 6 and 17 have been diagnosed with TS — this represents approximately 148,000 children.
Adam was first diagnosed with TS in 2005 at the age of 6. Adam’s mother, Rachel Ezekiel-Fishbein, explained it took doctors four years to diagnose her son.
“When Adam was in preschool, his teachers noticed some differences in him we really hadn’t noticed,” she explained.
After several doctor visits and a series of testing, Adam was diagnosed with Sensory Integration Dysfunction and Attention Deficit Hyperactivity Disorder.
But something still wasn’t quite right, and Adam was taken to a neuropsychologist who diagnosed him with TS, she said.
“We were keeping a log at Adam’s school, and the teachers would write things down about his day,” Rachel explained. “One day the log said Adam had gotten upset, and he had made a barking sound like a dog.”
After reading the log, Adam’s doctor realized he had TS, she said.
At first, the diagnosis did not make sense to the Fishbeins, but they soon learned that certain behaviors Adam would do were in fact tics, Rachel said.
“With Tourette’s, the brain is telling the body it must do this thing,” she said.
“People think that someone with Tourette’s can just stop a tic, but you can’t. It’s as if someone spilled pepper in front of you, and you have to sneeze. They can’t not do it; they ultimately must have that tic.”
“Usually someone can hold in a tic for a little bit of time, but ultimately you have to get it out,” Adam added. “It comes out stronger if you don’t let it happen.”
TS tics are variable and transient, Rachel explained. Currently, Adam has approximately three tics he said come out in stressful, loud or stimulating situations. He has a tic referred to as echolalia where he repeats a sentence someone says. He also makes an unexpected noise or a high-pitched scream, which sometimes occurs during lunch time in the cafeteria or gym class.
Living with TS has presented some challenges for the 15-year-old. He has experienced bullying and encountered uncertainty from teachers and administrators at his schools who believed “discipline would whip him into shape,” he said.
After his diagnosis, Adam was able to talk with peers about his condition and an in-service was held at Adam’s school to educate teachers and administrators about TS, which was organized by his parents.
Adam said he was embraced by his peers after he explained TS to them.
Continuing to educate the community about TS is what Adam aims to do as a TS ambassador.
“I didn’t realize how many kids with Tourette’s were not being advocated for and were being misunderstood,” he said. “I want to people to learn about TS.”
As an ambassador, Adam went to a special training with his mom and had the opportunity to meet with politicians in D.C. and lobbied legislators to provide funding for TS training and education, to join a bicameral, bipartisan caucus for TS, as well as support the CARE ACT, which is being introduced to support National Institutes of Health funding for more TS research.
Moving forward, Adam said he hopes to speak at schools and synagogues in the community to make people aware of the disorder. He is also selling bracelets as a fundraiser for his duties as ambassador, as well as to support TSA. Adam can be booked for speaking engagements through Rachel Ezekiel-Fishbein via makingheadlines1@me.com.
“The definition of an ambassador is to advocate and be a representative and that’s what being a TSA youth ambassador means to me,” Adam said. “I want to go everywhere possible and make people aware.”
Adam was one of 47 students from across the country who was selected to participate in TSA’s Youth Ambassador Program in March. The program trains teenagers with TS between the ages of 13 and 17 years old to go into local schools, churches and community centers to educate others about TS, while teaching understanding, sensitivity and tolerance for those living with the condition, according toTSA.org.
“I want to make a difference for other people that have Tourette’s and to everyone,” Adam said March 31.
TS is described as a neurological disorder that usually surfaces in early childhood or adolescence and involves involuntary movements, known as tics of the body, that tend to be frequent, repetitive and rapid, TSA.org stated.
According to a 2007 study conducted by the Centers for Disease Control and Prevention, three of every 1,000 children between the ages of 6 and 17 have been diagnosed with TS — this represents approximately 148,000 children.
Adam was first diagnosed with TS in 2005 at the age of 6. Adam’s mother, Rachel Ezekiel-Fishbein, explained it took doctors four years to diagnose her son.
“When Adam was in preschool, his teachers noticed some differences in him we really hadn’t noticed,” she explained.
After several doctor visits and a series of testing, Adam was diagnosed with Sensory Integration Dysfunction and Attention Deficit Hyperactivity Disorder.
But something still wasn’t quite right, and Adam was taken to a neuropsychologist who diagnosed him with TS, she said.
“We were keeping a log at Adam’s school, and the teachers would write things down about his day,” Rachel explained. “One day the log said Adam had gotten upset, and he had made a barking sound like a dog.”
After reading the log, Adam’s doctor realized he had TS, she said.
At first, the diagnosis did not make sense to the Fishbeins, but they soon learned that certain behaviors Adam would do were in fact tics, Rachel said.
“With Tourette’s, the brain is telling the body it must do this thing,” she said.
“People think that someone with Tourette’s can just stop a tic, but you can’t. It’s as if someone spilled pepper in front of you, and you have to sneeze. They can’t not do it; they ultimately must have that tic.”
“Usually someone can hold in a tic for a little bit of time, but ultimately you have to get it out,” Adam added. “It comes out stronger if you don’t let it happen.”
TS tics are variable and transient, Rachel explained. Currently, Adam has approximately three tics he said come out in stressful, loud or stimulating situations. He has a tic referred to as echolalia where he repeats a sentence someone says. He also makes an unexpected noise or a high-pitched scream, which sometimes occurs during lunch time in the cafeteria or gym class.
Living with TS has presented some challenges for the 15-year-old. He has experienced bullying and encountered uncertainty from teachers and administrators at his schools who believed “discipline would whip him into shape,” he said.
After his diagnosis, Adam was able to talk with peers about his condition and an in-service was held at Adam’s school to educate teachers and administrators about TS, which was organized by his parents.
Adam said he was embraced by his peers after he explained TS to them.
Continuing to educate the community about TS is what Adam aims to do as a TS ambassador.
“I didn’t realize how many kids with Tourette’s were not being advocated for and were being misunderstood,” he said. “I want to people to learn about TS.”
As an ambassador, Adam went to a special training with his mom and had the opportunity to meet with politicians in D.C. and lobbied legislators to provide funding for TS training and education, to join a bicameral, bipartisan caucus for TS, as well as support the CARE ACT, which is being introduced to support National Institutes of Health funding for more TS research.
Moving forward, Adam said he hopes to speak at schools and synagogues in the community to make people aware of the disorder. He is also selling bracelets as a fundraiser for his duties as ambassador, as well as to support TSA. Adam can be booked for speaking engagements through Rachel Ezekiel-Fishbein via makingheadlines1@me.com.
“The definition of an ambassador is to advocate and be a representative and that’s what being a TSA youth ambassador means to me,” Adam said. “I want to go everywhere possible and make people aware.”
No comments:
Post a Comment