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When I first suspected and began to research TS I said to myself, okay, okay it will be alright. I am the type of person who will research, read, research, and read whatever I can on any challenge that affects my life. I need to know everything about it so that I can make informed choices. Although I had suspected TS, it was till a bombshell that had exploded, however, I kept moving on for every detail I could find about TS. I was given so much help during this time from the neurologist, PATSA, blogs, books, and movies. The book that I still refer to is “Against Medical Advice,” by James Patterson and Hal Friedman, and the Hallmark movie, “Head of the Class.” These and more helped me so much in the beginning and to this day. I want to be able to help other parents, especially new parents, to know that TS is not a death sentence. It is the beginning of a journey we begin for our children by learning about TS, and the tools they need to be successful, and eventually transfer the reins to them.
My son has TS. We talk about TS as if it is a “Person” or “Entity.” When he was younger, I wanted to identify TS not as something bad, but to get him to understand what he could and could not do in order to control TS as much as possible. One of the other things we do is call his tics “Ducks.” I will say, I think I see a “duck.” Sometimes he will agree, or not. We will go through this a few more times maybe over a week or two, until I say nope, I was wrong, or he realizes that there is really a “duck” roaming around. At that point we will discuss if Competing Responses are necessary, or if he just has to make note of it. We have come a long way from the beginning when we first found out about his diagnoses. He has come a long way, and I am so proud of him. He was accepted and attended the Tim Howard Leadership Academy last summer, and he said on the ride home, “Mom I heard about kids with TS but I never saw any, and I felt like home for the first time.” What more can a mother ask for from her child.
An inspiring 10 year old is quickly becoming his own best advocate.
Kyle Swords of Pine Brook, NJ, is educating his community about an often misunderstood and misdiagnosed disorder which he faces every day. In kindergarten, he started developing tics and 2 years ago he was officially diagnosed with Tourette Syndrome (TS)—a neurological disorder characterized by involuntary movements or sounds known as tics. TS affects as many as 1 in 100 people, or an estimated 20,000 school-age children in New Jersey today.
Accepting the diagnosis wasn’t easy at first for Kyle and his family but, over the summer, he attended the NJ Center for Tourette Syndrome and Associated Disorders (NJCTS) Team Up with Tim Howard event at Rutgers and it changed his outlook on TS.
“Prior to this event, Kyle had never met other children his age who also have Tourette,” said his mother, Christina Swords. “It was an incredibly powerful experience for him to see so many other people, including [U.S. Men’s National Team Goalkeeper] Tim Howard, who share his condition. For the first time, having TS felt special to Kyle, and even a little bit ‘cool.’”
So, Kyle and his family decided it was time to educate their community about TS.
“People are often wary of behaviors they don’t understand and as such, we felt that a great way to support Kyle would be to bring awareness to the school about his condition,” said Christina.
The Swords’s reached out to NJCTS Education Outreach Coordinator Gina Maria Jones to schedule a Youth Advocate Presentation at Kyle’s school. With the help of NJCTS Youth Advocate Mike Hayden, Kyle educated more than 150 4th- and 5th-graders at Hilldale Elementary School about TS and about treating others with respect. Kyle bravely addressed the audience and answered some questions about his experience with TS.
Kyle stood proud after the presentation, knowing he had the support and understanding of his teachers and classmates.
“I’m not so worried about my tics anymore,” said Kyle. “Everyone understands that it’s just my TS.” If there is one thing Kyle wants people to know, it’s that “Kids with TS can do anything that kids without TS can do.”
Kyle is also serving on the Youth Committee of NJ Walks for TS at Mendham coming up on Saturday, November 14. Youth Committee members serve as local examples of individuals living successfully with TS—they form teams, fund-raise, and inspire others to join them for a day of awareness and advocacy on behalf of all individuals living with the challenges of TS.
NJ Walks for TS benefits the NJCTS Education Outreach Program, providing in-service trainings and Youth Advocate presentations to schools and hospitals across the state. The program is making it possible for NJCTS to provide the latest information to help professionals identify, diagnose and manage TS and its associated disorders.
“As a family, our goal is to spread awareness of TS into our community,” said Christina. “We want to give back and support other families in the community in any way possible.”
NJ Walks for TS at Mendham is set for Saturday, Nov. 14th at Mendham Borough Park at the intersection of Mountain and Park Avenues. The event is rain or shine and check-in will begin at 8 a.m. For more information about the event, or to learn more about Tourette Syndrome, visit www.njcts.org.
The NJ Center for Tourette Syndrome and Associated Disorders, Inc. (NJCTS) continues its mission to educate the public, medical professionals, and educators about the disorder. Recently, Education Outreach Coordinator Gina Maria Jones, M.Ed, delivered a faculty in-service to the entire Newton school district in Newton, NJ.
NJCTS received a call from the mother of a Newton High School freshman with Tourette Syndrome (TS) who wanted to ensure that her child had the support necessary for a successful school year. She turned to NJCTS to arrange for a presentation to the teachers. When the high school learned that there were other students living with TS in the school system, they took the in-service a step further and invited the entire district.
NJCTS Education Outreach Coordinator Gina Maria Jones, took the call and quickly agreed to do the presentation herself. With a background in education, Jones typically coordinates with NJCTS-trained presenters, who are all education professionals with advanced degrees, to facilitate the in-service presentations. But this case was different. As a 2002 Newton High School graduate, Jones—née Cicchino—couldn’t wait to bring Tourette Syndrome awareness back to her home community.
“For me, going ‘home’ to Newton High School was such a pleasure,” said Jones. “As an alumna of NHS, I was beyond honored to return to the school where I received a superb education and ‘return the favor.’ Not only was I able to thank the community that helped shape me, but I was able to educate them about Tourette Syndrome and associated disorders as well as the multitude of services and programs provided by NJCTS.”
NJCTS Faculty In-service presentations aim to help educators not only understand what their students with TS or associated disorders are going through, but also how to develop strategies for accommodating such students and fostering a supportive atmosphere. As a result of Jones’s presentation, more than 150 faculty and staff gained a better understanding of Tourette Syndrome, an inherited, misdiagnosed, and misunderstood neurological disorder characterized by involuntary sounds and movements know as tics that affects 1 in 100 children.
A natural presenter, Gina Maria grew up on the stage and performed in many of Newton High School’s musicals and plays throughout her high school years. She now uses her talent and Master of Education degree to spread TS awareness and to educate others about Tourette Syndrome and the associated disorders.
“Gina did an excellent job giving us an overview of TS and its associated disorders,” said Newton High School Principal Jeff Waldron. “The program was educational and spoke to how we can best address the needs of these students. At the end of the presentation, teachers working directly with students [living with Tourette Syndrome] got to meet with their families and Gina participated in those conversations. The entire presentation was well done and well received.”
To schedule an in-service in your area, please call 908-575-7350 or email Education Outreach Coordinator Gina Maria Jones at firstname.lastname@example.org. For more information about NJCTS please visit www.njcts.org.
The NJ Center for Tourette Syndrome and Associated Disorders (NJCTS) welcomes Assemblyman Timothy Eustace (D-38) to the honorary committee of the 6th annual NJ Walks for TS. This 5K walk and family fun run is a day of advocacy, awareness, acceptance and action and will take place at Mendham Borough Park.
NJ Walks for TS at Mendham benefits the NJCTS Education Outreach Program, which educates students and teachers at schools in every corner of New Jersey about Tourette Syndrome, anti-bullying and self-advocacy. Each member of the Honorary Committee has a history of support for the 1 in 100 children living with Tourette Syndrome (TS)—a neurological disorder characterized by uncontrollable movements or sounds known as tics.
Since its inception, NJ Walks for TS has emerged as a day of celebration and inspiration for kids, by kids.
“We thank Assemblyman Eustace for his continued support and recognition of this event,” said NJCTS Executive Director Faith W. Rice. “We hope to be joined by many others who want to step out on behalf of the thousands of kids living with TS in NJ.”
For more information about NJ Walks for TS, visit www.njcts.org/walk. To join the Honorary Committee, start a team or register for the walk, visit www.njcts.org or call Nicole Greco at 908-575-7350 or email@example.com.
The NJ Center for Tourette Syndrome and Associated Disorders (NJCTS) announces the addition of Assemblyman Jack Ciattarelli (R-16) to the honorary committee of the 6th annual NJ Walks for TS at Mendham. This 5K walk and family fun run is a day of advocacy, awareness, acceptance and action and will take place at Mendham Borough Park.
NJ Walks for TS at Mendham benefits the NJCTS Education Outreach Program, which educates students and teachers at schools in every corner of New Jersey about Tourette Syndrome, anti-bullying and self-advocacy; as well as doctors and other healthcare providers at hospitals across the state to identify and treat TS. Each member of the Honorary Committee has a history of support for the 1 in 100 children living with Tourette Syndrome (TS)—a neurological disorder characterized by uncontrollable movements or sounds known as tics.
Since its inception, NJ Walks for TS has emerged as a day of celebration and inspiration for kids, by kids and has grown to become a statewide movement with events Central and South Jersey.
“Assemblyman Ciattarelli is a friend to the TS community and we’re grateful for his continued support of NJ Walks for TS,” said NJCTS Executive Director Faith W. Rice. “We hope his example leads many others who are willing to step out on behalf of the thousands of kids living with TS in NJ.”
NJ Walks for TS at Mendham will feature activities for families, music and an atmosphere of acceptance for all ages.
For more information about NJ Walks for TS, visit www.njcts.org/walk. To join the Honorary Committee, start a team or register for the walk, visit www.njcts.org or call Nicole Greco at 908-575-7350 or firstname.lastname@example.org.
Nominated by Jen Heicklen and her daughters, Anna and Ava, Carole Ramage was chosen as this year’s winner by the NJ Center for Tourette Syndrome
Principal Carole Ramage of Neeta Elementary School in Medford Lakes, NJ continues to be a source of support and compassion in Anna and Ava Heicklen’s lives. She has taken the girls under her wing, going above and beyond her responsibilities as a school administrator.
Ramage comforted Anna and her mother, Jen, early in Anna’s 3rd grade school year when she noticed Anna’s hesitation to enter school. Often, Ramage would approach the car and ask Anna to be her helper, easing Anna into her morning routine.
In fifth grade, Anna’s tics were becoming more noticeable to her peers and Ramage encouraged her to make a presentation to her class about Tourette Syndrome (TS). The presentation changed Anna’s life and she now feels comfortable knowing that everyone knows about TS and supports her.
Anna Heicklen now enters the school with the confidence Ramage helped her find within herself. For that Principal Ramage was nominated by Jen Heicklen to be the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) Educator of the Year. The Heicklen family recognized Ramage on the last day of school and the award was presented to her at the NJ Walks for TS at Medford Lakes on September 20. NJCTS annually recognizes teachers, guidance counselors, administrators, and other education professionals who are making a difference in the lives of a student with TS—an inherited, misdiagnosed, misunderstood neurological disorder that affects 1 in 100 school-age children.
“If it weren’t for Mrs. Ramage advocating for my child, she would not have presented to her class,” said Heicklen. “The presentation changed my daughter’s life. From that day on she has not been upset one day about attending school. She feels comfortable. Without Mrs. Ramageʼs influence on our family, this would not have happened.”
Anna’s younger sister Ava, who also has TS, was encouraged by Ramage to make a presentation to her third grade class. Ramage continues to update the Heicklen family with how well Anna and Ava are doing in school.
“She would send me texts during the day letting me know that Ava was doing well,” said Heicklen. “This information allowed me to relax and worry less about my kids. It is time for this unsung hero to be acknowledged and rewarded for her dedication to the kids for her selfless acts.”
NJCTS has granted Educator of the Year awards since 2001. More information about the Educator of the Year award is available by calling 908-575-7350 or visiting www.njcts.org.
Jen Heicklen and Maureen Faber have a lot in common. They both own local businesses—Jen and her husband Steve own Jersey Pools and Spas and Maureen owns Medford Fitness. They both support their community. They both have children. But what brings them together these days is the fact that they both have daughters with Tourette Syndrome.
Together, they’re the force bringing NJ Walks for TS to Medford Lakes on September 20th.
“We consider ourselves very fortunate as this disorder is not life threatening, however it is heartbreaking,” said Jen of her two daughters Ana and Ava.
Like many kids with TS, Maureen’s daughter Hayley has dealt with feeling socially unaccepted.
“As a parent, I’m compassionate for every ‘Hayley’ in the world, and for every parent who also helplessly watches their children battle with the consequences of this disorder,” said Maureen.
Tourette Syndrome is a neurological disorder characterized by involuntary movements or sounds known as tics. TS is frequently accompanied by ADHD, obsessive-compulsive disorder, mental health issues and learning disabilities. As many as 1 in 100 children exhibit symptoms of TS, with onset of symptoms beginning around age 7 which concurrently challenge a child’s physical and emotional well-being.
“There are almost as many people who suffer from TS as there are people who suffer from diseases more familiar to the public such as autism,” said Maureen. “But, sadly, there are not nearly the amount of advocates who have committed to help the children who are plagued by Tourette.”
NJ Center for Tourette Syndrome and Associated Disorders (NJCTS) was founded with this need in mind by Faith W. Rice, the mother of an adult son with TS. Over the past decade, NJCTS has established programs to provide support for families the TS community while training doctors and educators to innovate identification and treatment strategies. In 2010, NJ Walks for TS began as an advocacy event started for kids, by kids to benefit kids with TS. Since then, NJCTS has brought NJ Walks to North and Central Jersey. Later this month, the 5K walk and family fun run will make its official South Jersey debut at Beach 1 in Medford Lakes.
“My involvement in NJ Walks for TS complements my personal mission to raise awareness, in an effort to gain the support of the public—which will lead to greater scientific understanding of TS, foster social acceptance, and advance treatment options,” said Maureen.
“It has been a long road in the Heicklen House, just as in any home where there are special need issues,” said Jen. “The difficulty is not in the tics themselves, but in seeing the girls lack of confidence when ridiculed or excluded. But, this has changed over the last year due to the girls dedication in educating their peers and community about TS.”
Jen’s daughters Ana and Ava have become trained NJCTS Youth Advocates and have learned to fight the stigma attached to TS by sharing the facts about the disorder on behalf of themselves and others with TS. NJCTS Youth Advocates deliver school presentations to their peers and participate in hospital grand rounds to educate doctors about the difficulties of life with TS.
All proceeds from NJ Walks for TS will benefit these programs which are part of NJCTS Education Outreach.
“We cannot tell you how this advocacy work the girls are doing has built their confidence, they are empowered. You can help them empower others by joining us for this great day,” said Jen. “You can help by signing up for the walk, being a sponsor, or volunteering to help on September 20th.”
Registration and sponsorship information is available at www.njcts.org/walk. NJ Walks for TS at Medford Lakes will take place Sunday, Sept. 20 at Beach 1 (Vaughan Hall) on Tabernacle Road rain or shine. Check-in begins at 8 a.m. All ages and abilities are welcome.
“As a family who has supported their community endlessly, we respectfully request that you all support us with this walk,” said Jen.
Maureen concluded, “one in every hundred children living in New Jersey suffers from TS, battling every day in hopes of a cure—participation on Sept. 20th will keep tens of thousands of children encouraged as we collectively raise awareness.”
By: Celeste E. Whittaker, @cp_CWhittaker
Jen Heicklen has seen a huge difference in her daughters’ confidence levels since they started talking about the disorder they share.
Getting up and talking in front of classrooms across the state about Tourette syndrome has not only helped the two girls’ self-esteem, but has also educated hundreds of children about the disorder.
Tourettes — an inherited neurological disorder characterized by uncontrollable movements or sounds known as tics — has impacted both Anna, 11, and Ava, 10 and sharing their story has helped others and themselves.
Along with their mother, they’ve helped bring a New Jersey Walks for Tourette Syndrome 5K walk and family fun run to South Jersey for the first time. The event is set for 10 a.m. Sept. 20 at Upper Aetna Lake on Tabernacle Road.
She and the girls came up with the idea after hearing about the walks in other parts of the state.
“We said you know what, let’s do one down here,” she said. “My kids have worked hard to get people involved. My whole community is getting involved. For me personally, it’s not about raising money necessarily it’s about building my kids’ confidence. The money they do raise will help their confidence. There’s nothing better as a mom than to see your kids go from no confidence to confidence.”
Anna and Ava are now youth advocates for the New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS) and have received extensive training on how to spread awareness. They’re certified to present programs to schools, organizations and clubs throughout the state. At a recent presentation, a 12-year-old boy was inspired to tell his classmates that he also had Tourettes.
My husband and I have not one, but two children diagnosed with Tourette’s Syndrome (TS). We consider ourselves very fortunate as this disorder is not life threatening. However, it IS heartbreaking.
Tourette’s Syndrome is a genetic neurological disorder that affects both your physical and emotional well-being. The hallmark sign of Tourette’s is tics. These are sudden, brief, intermittent movements or sounds. Symptoms range from mild to severe. Severe symptoms may significantly interfere with communication, daily functioning and quality of life. Tics are involuntary just like blinking. If you try not to blink, eventually, your body takes over and blinks for you. This is the same for tics. My girls can try to hold in a tic, but eventually their body takes over and the movements begin. Try not blinking right now, hold out as long as you can. Your eyes are becoming uncomfortable, dry and you have the insatiable desire to blink to feel better. This is how my kids feel 24/7 while trying to control and hold in their tics.
Many people misunderstand Tourette’s and think that it means a person cannot control words that come out of their mouth. This is a unique and very uncommon form of this disorder, but media and society choose to focus on this for the “comedy” of it. Our girls do not have this form of Tourette’s.
Besides the physical ramifications, there is also the emotional part. Not only the emotions they experience when teased, but also in how they perceive social situations. For example, I might turn to speak to my daughter, but I scowl because the sun is in my eyes. Rather than understand the sun is in my eyes, she may interpret that I am angry with her. Essentially, the misread social cues can cause social interaction issues.
It has been a long road in our house, just as in any home where there are special need issues. The difficulty is not in the tics themselves, but in seeing the girls lack of confidence when ridiculed or excluded. However, this has changed over the last year due to the girls dedication in educating their peers and community on Tourette’s Syndrome!
Our girls have learned to advocate for themselves and those who share their disorder. They have become Youth Advocates for NJ Center for Tourette Syndrome and have received extensive training on how to spread awareness. In the past year, this is what they have accomplished:
ABC News in Philly did a feature story on Anna and how her bravery allowed her to approach her 5th grade class and explain about her disorder and answer any questions they had. From this, a couple kids within her school felt comfortable to ask for help with their own TS.
When Ava was diagnosed, Anna stood at her side while they both explained how Tourette’s works to her 3rd grade class. Both girls are certified to present programs to schools, organizations and clubs (and have done so) throughout the state. At there last presentation, a 12 yr old boy was inspired to tell his classmates that he also had Tourette’s.
The girls are also trained to work with Neurologists when they teach at Resident symposiums about diagnosing and treating TS. The girls teach the Residents how to treat the person, not just the disease.
The girls were honored at NJ SkyBlue Professional Women’s Soccer team game for their dedication to spreading TS awareness.
Tim Howard, US World Cup Soccer Goalie, who also has TS, presented a soccer clinic for kids with TS and the girls were invited to meet him.
The girls approached our local borough requesting that June 4 be designated Tourette’s Awareness Day. Their request was granted.
Currently, the girls are organizing a Tourette Syndrome Awareness 5k Family Walk in our town, Medford Lakes, on Sunday, September 20. http://www.active.com/donate/NJWalksMedfordLakes
As a family who has supported their community endlessly, we respectfully request that you all support us with this Walk. All money raised goes toward the programs the girls (and others) put on in our area along with helping to fund the NJCTS Youth Scholarship fund.
You can help by signing up for the walk, being a sponsor, or volunteering to help with the walk. Anything is appreciated. We cannot tell you how this advocacy work the girls are doing has built their confidence. They are empowered. You can help them empower others by joining us for this great day.
Thank you to all who have supported our family thus far and to those who will support us now. Applications for the walk, donations and sponsorship are available at Jersey Pools and Spas and our family. Please join us and help build the confidence of other kids with challenges. Thank you.