Scouts share lessons of struggle with disabilities

Scouts share lessons of struggle with disabilities

For the past four years, Emma Parente, a Girl Scout in the eighth grade at Bishop Kellenberg Memorial High School, has struggled with physical tics often associated with Tourette’s Syndrome and the social stigma that goes with them.

Last Thursday night, Emma and fellow East Williston Troop 1283 Girl Scout Lauren D’Angelo earned their Silver Awards with a presentation at East Williston Village Hall intended to build awareness about disabilities such as Tourette’s Syndrome. 

Emma told the story of her tics, which did not escalate to Tourette’s Syndrome. She was assisted by her cousin, Scott Miller, a Life rank Boy Scout from Troop 45, who does have Tourette’s Syndrome.

“If some people know more about it, maybe they would learn to ignore the tic and focus on the person. I remember how I felt when I felt alone,” Emma said in explaining her disability to an audience of Boy Scouts, Girls Scouts and parents.

Emma, the daughter of East Williston Deputy Mayor Bonnie Parente, said her tics began in 2009 with a vocal “huffing” and simultaneously moving her jaw in an exaggerated manner. She demonstrated both tics during her presentation and said her parents initially thought she was suffering from asthma. Once that was ruled out, she said, she began treatment with neurologists.

“I went to two pediatric neurologists and I learned a lot,”  she said.  

Emma learned there is no known medical reason for the onset of tics – or Tourette’s Syndrome – and that she could eventually grow out of it. She said she learned that genetic and environmental factors were thought to be the cause. She also learned medications could help and she began taking medications that brought on side effects, including hives and dry mouth. 

“My brain will learn to stop if I’m left alone,” she said.

Teachers in school would tell her to “stop fooling around” and her parents also sometimes forgot and instinctively asked her if she was alright when she manifested the involuntary tics.

Her cousin Scott, a junior at North Shore High School, said he was diagnosed with Tourette’s Syndrome at age seven. But Scott said the different symptoms he experienced, including biting his tongue, weren’t the worst aspect of the affliction.

“The main problem with Tourtette’s is not the tics themselves, but the inability of people to understand it,” he said.

Lauren D’Angelo, an eighth grader at The Wheatley School, talked about coping with problems she experienced from stress, including playing the piano and working on pieces of art, either painting or drawing.

“Making a drawing or figuring out how to play a tune relieved my stress,” she said.

She said she has also been playing piano regularly at her grandmother’s assisted living facility and said that was a tonic for both the player and her audience.

“I realized that my simple act helped many people,” she said. “Art helps the elderly, adults, teens and kids. It’s mind-boggling to think there is an easy way to take stress away, but no one knows about it.”

She said creating mandalas, a spiritual and ritual symbol characterized by circular color patterns, is a particularly good way to relieve stress.

The Girl Scouts’ presentation included the screening of a short HBO documentary, “I have Tourette’s but Tourette’s doesn’t have me.”

“The hardest thing, you probably can’t make friends as easily as other kids,” one young man in the documentary said.

An accomplished young classical pianist said his Tourette’s disorder didn’t affect him when he is immersed in playing piano, and said, “I’m not going to let it get in my way of enjoying life.”

Emma said she has had similar experiences with singing and dancing lessons.

“When I was in my singing lessons, I hardly do my tic at all,” she said, adding that when she’s dancing, “I get so caught up in it, I forget I have a tic.”

Now, she said, when she meets a new person, she tells them about her tic. But she echoed the boy’s comment in the HBO documentary about tics affecting relationships with other kids.

“Kids, when they meet someone with a tic, they immediately judge them,” Emma said.

The room resounded with applause when the two Girl Scouts finished their presentations after answering a few questions from the audience.

“I think you’re very brave,” said Lou Llanes, a merit badge counselor for Troop 45, who was there to help member of his troop earn their Disability Awareness merit badge.

Lauren D’Angelo assisted younger Girl Scouts and Daisies in making mandalas. Emma distributed Awareness badges she and Lauren designed to fellow Girl Scouts who earned them by attending the presentation.

Nearby, Bonnie Parente said she had her reservations about her daughter addressing the topic of her disability. But after her presentation they had vanished.

“I am extremely proud that she decided to teach people by telling them something about herself,” Parente said. 

No posts to display


Please enter your comment!
Please enter your name here