Fifth-grader is Stepping Up Awareness Efforts

Kyle Swords of Pine Brook, NJ with NJCTS Youth Advocate Mike Hayden at a recent presentation at the Hilldale Elementary School.

Kyle Swords of Pine Brook, NJ with NJCTS Youth Advocate Mike Hayden at a recent presentation at the Hilldale Elementary School.

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.

Hilldale Elementary School student and his family are giving back, supporting other families affected by Tourette Syndrome in their community.

Hilldale Elementary School student and his family are giving back, supporting other families affected by Tourette Syndrome in their community.

“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.

Newton High School Alumna brings Tourette Syndrome education back ‘home’

NJCTS Education Outreach Coordinator Gina Maria Jones delivers an in-service presentation to more than 150 faculty and staff in the Newton School District at Newton High School.

NJCTS Education Outreach Coordinator Gina Maria Jones delivers an in-service presentation to more than 150 faculty and staff in the Newton School District at Newton High School.

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 gjones@njcts.org. For more information about NJCTS please visit www.njcts.org.

Neeta Elementary School Principal named 2015 NJCTS Educator of the Year

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

Neeta Elementary School Principal Carol Ramage accepting the NJCTS Educator of the Year Award from NJCTS Executive Director Faith W. Rice at NJ Walks for TS in Medford Lakes on September 20.

Neeta Elementary School Principal Carole Ramage accepting the NJCTS Educator of the Year Award from NJCTS Executive Director Faith W. Rice at NJ Walks for TS in Medford Lakes on September 20.

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.

The 8 Things This Parent of a Child with Tourette Wants You to Know

As a parent of a child with Tourette Syndrome these 8 things are obvious. Here is my list of what I want folks to know:

  1. I have looked into ways of helping my child with tics and each kid is different. Saying it is sugar or video games is not the cause of the condition.
  2. Telling my child to stop or calm down does not help—it makes it worse.
  3. When you speak of his condition in front of him (just like any condition) he can still hear you!
  4. No, there is not a “fix it all pill.”
  5. The best medicine is for the person the child trusts to allow them to work one on one (without anyone interrupting us) each time a new tic comes on or when an existing one is worse than the last 6. Ignore it and let the parent handle it—please—and thanks!
  6. Usually the best medicine in reducing the tics is physical play—whether it is cleaning, chores, fixing something, being given a challenging puzzle, helping a kid who is not as intelligent because YES most all kids with Tourette’s are also highly intelligent.

To add to the above, here are some things that would be helpful to hear to assist the parent/child:

  1. “I understand you need time, let me leave you all be. If you need assistance, please let me know how/what I can do to help.”
  2. “Is there anything the child has or a place the child can go that calms them down to help release the tics? If so let me establish a place in public forums for this to happen.”
  3. “I am aware that the tics will change from day to day depending on various ways each child’s mind works—that is the whole reason each is different is due to the brain waves in each human mind working differently. No two stars are alike, no two snowflakes, and no two brains will ever be the same…ever and yet it is refreshing and scary all at the same time—same with death…no two deaths are the same and it is impossible to predict.”

Here is what would be helpful to reduce the amount of work I have to put into each public arena (i.e. school):

  1. Mandatory conference that all school staff attends—especially nurses or aide givers in the school should know how to handle a child with tics.
  2. Areas where a child can go with any neurological or physical disability where they can “let loose” and get their mind clear however they need.
  3. Natural examples of how the mind can heal itself from anything it is thinking.

Cresskill students get lessons about Tourette Syndrome from NJCTS Youth Advocates

NJ Center for Tourette Syndrome’s (NJCTS) Youth Advocates inspired, educated and spread awareness about Tourette Syndrome to a total of 1800 Cresskill, N.J., students from May 11 through May 15, as part of a weeklong TS awareness campaign in the district.

Tourette Syndrome (TS) is a neurological disorder characterized by involuntary movements or sounds known as tics. It is estimated that 1 in 100 children show signs of the disorder—as many as 20,000 school aged kids in New Jersey alone. TS is frequently accompanied by ADHD, obsessive-compulsive disorder, and learning disabilities. Kids with TS are at increased risk for bullying and report feelings of isolation due to their condition. NJCTS Youth Advocates share their experiences with TS and spread messages of encouragement, acceptance, and self-advocacy.

Drew Friedrich spoke about TS to over 600 high school and 400 middle school students on May 11. Drew is 22 years old, a recent graduate of County College of Morris, has been a Youth Advocate since 2012, and was a coach at the first annual Tim Howard Leadership Academy last August.

Drew did an amazing job connecting with the students and was comfortable in his skin, TS and all. He showed students that anything is possible and being different can be empowering. The students asked wonderful questions and started great discussion. Continue reading

NJCTS discusses Tourette Syndrome at Centenary College Abilities Day

HACKETTSTOWN — Spreading awareness of Tourette Syndrome and providing world-class resources is at the heart of the New Jersey Center for Tourette Syndrome’s (NJCTS) mission. This month, NJCTS took part in Abilities Day at Centenary College in Hackettstown.

Myself and volunteer Maddie Pucciarello discussed the programs and services of NJCTS with Centenary students, local teachers and school administrators.

Abilities Day was a wonderful opportunity for us to show students planning to become educators how education outreach provided by NJCTS can help them in their future careers to improve the lives of young students.

During the 150minute presentation, we shared information about NJCTS. Pucciarello, a graduate student in public health at Rutgers University, discussed her experience with Tourette Syndrome and how she became involved with the organization.

Tourette Syndrome is a neurological disorder characterized by involuntary movements or sounds known as tics. As many as 1 in 100 school-aged children show signs of TS, which is frequently accompanied by ADHD, obsessive-compulsive disorder, depression, anxiety or learning disabilities.

We are looking forward to returning to Centenary to deliver an in-service presentation for education students on the topic of Tourette Syndrome and its associated disorders.

For more information about Tourette Syndrome the Center and its Education Outreach Program, please visit www.njcts.org or call 908-575-7350.

Need help with a 504 meeting

Hello, my 11-year-old has a vocal tic disorder. They say it’s not Tourette because it’s just vocal tics so far. Hers started about 3 years ago with just a weird throat clearing sound, then she added a whimper and now it’s any hard letter sound squeals and chirps and this weird “shweh”-type sound.

Her tics have recently became so frequent her teacher has asked for a 504 plan so that she can have permission to leave the room when the tics are bothering her. Her neurologist just this week started her on Topamax to help her get some relief. Any suggestions for me to take to the 504 meeting?

Kane is a TS superhero!

This is Kane! Kane is 10 years old from Murray Iowa. Kane is a loving child who enjoys helping other people! Kane and I have had quite the journey together! I was only 18 when I gave birth to this amazing young man! God blessed me with such an amazing son!

He was diagnosed with Tourette when he was 7 years old, after we noticed he was making movements and noises that were out of his control. He has vocal and muscular tics. Kane also lives with OCD, generalized anxiety, social anxiety and Impulse control disorder. Fortunately we live in a small town filled with supporters! Kane has a wonderful small class at Murray schools and his teachers allow us to celebrate Tourette Syndrome Awareness month by bringing in ribbons and snacks! Kane is able to teach his peers the ends and outs of Tourette! Kane has reached a major milestone this year!!

For the past couple years, he had been seeing a psychologist, biweekely. As of January of this year, he is no longer needing therapy!! He is a spontaneous little boy who enjoys riding his four wheeler and bicycle with his little sister! He will be participating in baseball this summer! His family and I are so proud to call him our superhero!

You can follow Kane’s story on his Facebook page here: https://www.facebook.com/awarenessforkane

New Jersey 7th-graders learn a lot from Youth Advocate Presentation

My daughters Sarah and Anna did a New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) Youth Advocate Presentation for more than 150 7th-graders last week at Galloway Township Middle School, and to put it bluntly…they killed it.

The presentation went great.  The audience really learned something and thought this was a great presentation to talk about. The kids were really into it and asked a lot of questions.  The Vice Principal, teachers and guidance counselor loved it. They said they want the girls to come back next year for the incoming 7th grade. Here are some pictures:

Tourette Syndrome + OCD was exhausting & difficult

It was more than 23 years ago that I was diagnosed with Tourette Syndrome.

I’ve learned a lot in that time. About myself, about others and most of all, that our relationship with mental health and conditions like TS is far more challenging than it should be.

My parents had a lot on their plate, jobs, managing a household, raising 3 children (one with considerable special needs), when I started developing some unfamiliar behaviours. A reoccurring urge to violently shake my head was one that began to frighten them. I once became so distracted with this urge that I stopped my bicycle in the middle of the road to indulge, without paying attention to the flow of cars around me. Sometime after that we began seeing doctors and specialists and figuring out what was going on.

Tourette Syndrome is a neurological condition that essentially causes repeated involuntary movements and sounds that are referred to as “tics”. It affects everyone differently, and contrary to what you may have seen in movies, most persons affected by it do not swear uncontrollably.

Tourette Syndrome was something seemingly unknown to most people and there was lots of learning for all of us to do. What was most challenging for me wasn’t necessarily my life at home or these urges (“tics”). It wasn’t that I had to live with them that caused me the most trouble, it was that I was expected to live a normal life in a world that wasn’t always going to just let it happen.

From experience, I quickly knew that each time I gave in to my tics, someone was going to notice. I knew that each time someone noticed, they were going to make choices. Were they going to pretend nothing happened? Were they going to exploit the opportunity to make a spectacle of it and lead others in a chorus of teasing and diminishment of my character? Or were they going to simply get “weirded out” and lose trust in even being near me?

Naturally, thinking about all of these things stressed me out and just fuelled more of a need to indulge my tics. Trying to hide and suppress them took a lot of energy. During the worst of it, there were probably days where I spent most of my time managing these expectations and very little on school work, engaging with friends or anything else until I finally had a moment of privacy. I was usually too exhausted to do a whole lot with those moments.

As I’ve written before, there were other things also happening to make my childhood difficult in ways that probably interacted with or exasperated this condition.

Continue reading