Change the world. Stand With The GreaTS! Join the global community to break down social stigmas, create awareness, and provide support resources around Tourette Syndrome. This is your chance to make a difference. Get involved today at standwiththegreats.org. Share your message of support using #standwiththegreats.
Hello, my name is Candy. I am the mother of three kids and my oldest son, 23 years old, has ADD. My daughter, 16 years old, is doing great in school. And my youngest is 9 1/2 and he has ADHD and was just diagnosed with TS. I’m a bit overwhelmed with it all, and having in-laws whom cannot except anything that there is anything wrong. They don’t know about the TS yet. My husband is also hard to except this as well. I feel like I’m going to battle alone! Any help would be wonderful. Thank you for your time and I hope to hear from you soon.
And so here’s mine. It seems as if the moment my kid hit 13 the teens hit full force. The defiance, the arguing, the overall surliness.
And, well, if I’m being honest, I thought it was going to be one of those deals where my kid, while still totally socially appropriate, would still find me amazing and cool and, despite being busy with friends and outings and Boy Scouts, would want to jump in the car the moment I say, “Hey, who wants to the grocery store and crash the free sample table!”
Every single little dream there? Lost. We’re not talking by a little. We’re talking epic defeat. For one thing, my kid is far from winning any social awards at school. Oh, he has a bunch of friends, but they’re kind of like him… a bit on the wacky side… a little bit clueless on the when girls like them side. (Yes, Stink, if she remembered to call you on your birthday, buy you a gift, buy you a Christmas gift and ask you to teen night, there just might be some interest.)
Boy Scouts He doesn’t do uniforms.
Stink and his friends are like oversized male children with skinny legs, crazy fros and a scent that can only be described as a cross between testosterone and Axe.
The difference between him and his other friends, however, is that I can’t make out their duck quacks from across a crowded parking lot. When they roll their eyes, I know it’s because they are being sassy and not because Mr. Flappy Lid has made his appearance again. When his buddies nod, it’s to mean “yes” or “no”, and not the head jerk prodigal son making his triumphant return. (No, I’m not having a banquet for these returning relatives. But if I did, you could bet it would be gluten and dairy free.)
Stink’s tics – the loud ones – are back. And this time, they are stronger than before. (Gosh darnit, Taurine, you let me down again. You’re like that bad boyfriend. Just when I think I can trust you, you leave my sorry butt in a heap of despair!)
Here’s the thing, though: my kid, like his eyes, just roll. He doesn’t see them as a problem. They don’t make him different or geeky or less than. It’s simply something he does, not who he is.
In my brain, this should be enough. But in my heart, I still die a little bit. As a mother of a kid with this wonky disability, I fight so many demons:
- Do I not love him enough for who he is – including his noises?
- Do I not love him enough because I’m not making him take meds?
- If I am not choosing to not put him on medication, then am I ruining his life with my occasional “Keep it down, kid. PLEASE!” (Oh yeah, Saturday’s “G-DAMNIT, STINK, QUIET DOWN FOR ONE SECOND!” was epic. He literally curled into the door frame of the car and didn’t talk to me for ten minutes. He also didn’t tic. And that made it worse. I won! For being a butt wipe! Hooray for me! Send the Mommy Shaming Award my way, FedEx!)
- And what about his sister? I have spent soooo much extra time with her the past few years – I’ve wanted to… it’s not a challenge – but it’s a balancing act to say the least.
I had a good cry last night. I mean, a good one.
Me: Stink, I’m so sorry. I just suck sometimes. I feel so bad for yelling at you about that noise.
Stink: Mom, it’s okay. (Quack quack) I forgave you already! I don’t keep resentments!
Me: I know, but I feel awful. I just love you so much. I don’t want to ruin you.
Me: Well, thank you. And hey – I promise – I am not going to ask you to stop ticking again.
Stink: Also impossible! (He’s right. Now I’m really sobbing.) It’s okay to cry, Mom. You got to let it out. (He farts.) Ahhh… it just feels better to release, you know?
I swear, the noises from that kid never stops. But his biggest ticker is his heart. I’m grateful.
And so, once again, I am saying it here: I am determined to not get so wound up on tics. But I can’t do it on my own. I just can’t.
Dear God, get in the car and hang with me. Don’t drive like that Jesus Take the Wheel Song. That would creepy to see a long haired dude in a tunic driving my stinky SUV. But be with me. I need the support. Andrea. PS: I hope you can handle Cheeto crumbs and Country Music.
Yup, when I give it to God, there’s just so much more perspective.
This morning, after a little praying, it dawned on me that I might not ever accept this disorder. I can, however, accept that it’s sometimes just hard. The reality of what is, not what I want it to be, was not always my first choice toward serenity, but it sure as hell makes for a more a more peaceful reality. I can do something with reality. I can fill bad days with joy. I can walk away from yelling at my kid and stroll in the sunshine instead. I can write. I can pray. I can help another mom who is suffering. (Write me, moms! HappilyTickedOff@).
When God’s at the center of my problem, not my misery, I can relax. I can remember that it’s not my job to make my son disability-free. It’s my job to love him. And boy, do I.
Tonight I took a break. It had been a long day of working and cooking and kid pick-upping and homeworking. Instead of sitting at home counting tics doing more Ebay listings, I went with my daughter to a YMCA banquet. She was one of 3 asked to perform for a fund raising event.
Playing Wendy in an upcoming Peter Pan show, she put on her yellow Mary Janes with white ankle socks. She stood straight, hair in bun, and spoke in a sweet British accent, “She’s the person who kisses you goodnight…” and then she sang… “your mother and mine… your mother and mine.”
She went on to sing, “Mothers tell stories… they often do… what you can’t do… mothers can do.”
Raising my kid with Tourettes isn’t unlike my daughter getting up on stage, singing in front of hundreds. I get to hide my fear with my poker face. I get to get dressed every morning (the bun is optional) and I get to sing my heart out because the lights shining on me. And maybe, at the end of the day, my son will remember his mother who loved him enough to write a book, to pen a blog, and hopefully help a few others out there not feel so alone.
“Mothers tell stories, they often do, what you can’t do, mothers can do.”
Moms, you can do it. You can. And worse case, if your day is hard, consider climbing into bed with your family – tics and all. You’ve got one childhood to tell a good story. (Pssst: You are an amazing hero in this story. Give it a good ending!)
This post dedicated to Denise, who always seems to show up when I need it most. I am grateful.
Until next time, May God grant you the serenity to accept the tics you cannot change, the courage to change the tics you can, and the wisdom to know the difference.
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.
Drive through Teaneck and you might catch “The Great Marsini” at work. The entrepreneurial 10-year-old makes sure his lemonade or hot cocoa stand (depending on the season) stands above the rest.
“I do magic tricks,” said Ben Mars. “One time a man stopped by on his way to bringing his wife to the hospital just for a glass of lemonade.”
Now the fifth grader is trying to catch the public’s attention for a different cause. He’s a member of the Youth Committee for the sixth annual NJ Walks for TS at Mendham. The event is a 5K walk and family fun run to benefit the Education Outreach Program of the NJ Center for Tourette Syndrome and Associated Disorders, Inc. (NJCTS).
Tourette Syndrome (TS) is an inherited neurological disorder characterized by involuntary movements or sounds known as tics. TS affects as many as 1 in 100 people and is frequently accompanied by ADHD, obsessive-compulsive disorder, learning disabilities, and childhood mental health conditions.
Kids with TS often report feelings of isolation and having a visible disorder makes them targets for bullies. Classroom learning is challenging for children coping with more than one disorder beyond TS. School can be extremely difficult for the 20,000 New Jersey kids living with TS. Ben was one of them.
“It was hard to find a school for me,” said Ben. “I kept thinking am I a problem?”
He is happy at The Park Academy in River Vale and now wants to help others with TS feel understood. He invites the public to attend NJ Walks for TS at Mendham on November 14th to learn about TS and to extend friendship to the TS community. Registration is available at www.njcts.org.
All proceeds go to outreach programs to teachers, students, doctors, and other healthcare professionals at schools and hospitals across the state.
Ben knows firsthand the empowerment that kids with TS feel once they are understood— especially through in-school presentations.
As for his greatest trick, Ben wants to make TS disappear by working actively for a cure. He’s on the right team as NJCTS is home to the world’s only TS Cell and DNA repository at Rutgers University. For right now, the scientists will handle the research while Ben uses his charm to bring attention to the cause.
On November 14th, Ben will walk with scores of other kids with TS for a day of awareness, acceptance, and advocacy—and he wants you to join them. Registration for NJ Walks for TS begins at 8 a.m. at Mendham Borough Park at the intersection of Mountain and Park Avenues. The day will feature a timed 5K and simultaneous walk, music by the Good Works Band and solo artist Dawson Coyle, food and family fun. For questions about the walk, or to learn more about TS, visit www.njcts.org or call 908-575-7350.
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 (NJCTS) welcomes Assemblyman John Wisniewski (D-19) 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; as well as doctors and other healthcare providers 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 include Central and South Jersey.
“Assemblyman Wisniewski is lending his support to stand up for the TS community and we are grateful,” 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.”
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.
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.
CRANBURY, NJ- Senator Linda Greenstein (D-14) has joined the Honorary Committee of the first 5K walk and family fun run in the region to benefit local children and families with Tourette Syndrome.
NJ Walks for TS at Medford Lakes will take place on Sunday, Sept. 20 at Beach 1/Upper Aetna Lake. It’s an offshoot of the highly successful NJ Walks for TS at Mendham which began in 2010 to support the work of the NJ Center for Tourette Syndrome and Associated Disorders (NJCTS). NJ Walks for TS was started by kids, for kids; in fact, the impetus behind bringing this event to South Jersey is the Heicklen family who aim to raise awareness and support for the thousands of kids and families living with TS.
Tourette Syndrome (TS) is a neurological disorder characterized by involuntary vocal or muscle movements known as tics. TS is frequently accompanied by ADHD, obsessive-compulsive disorder, anxiety, depression or learning disorders. As many as 1 in 100 people show signs of TS, however, the disorder often remains misunderstood and misdiagnosed. Proceeds from NJ Walks will benefit the Education Outreach Programs of NJCTS which deliver outreach to healthcare professionals, educators and students across the state.
“We’re grateful to Senator Greenstein for her continued participation and support of NJ Walks for TS as we bring this special event to more families across the state,” said NJCTS Executive Director Faith W. Rice.
NJ Walks for TS at Medford Lakes will feature activities for families, music and an atmosphere of acceptance for all ages. Registration is $22.50 now through August 31st, after then it will be $25. Donations will be accepted online for individuals and teams-regardless of event attendance. Sponsorships are still available for corporations, small businesses and individuals by calling 908-575-7350. For more information about Tourette Syndrome and the work of NJCTS, visit www.njcts.org.
5k walk and family fun run in Medford Lakes will benefit NJ Center for Tourette Syndrome
The NJ Center for Tourette Syndrome and Associated Disorders (NJCTS) is expanding its successful NJ Walks for TS program to include South Jersey. Registration is now open for individuals and teams to join NJ Walks for TS in Medford Lakes on September 20th.
NJ Walks events in North and Central Jersey draw hundreds of children and adults as a show of support to their loved ones living with TS—an inherited neurological disorder characterized by uncontrollable movements or sounds known as tics. People with TS frequently have associated mental health and learning disabilities including obsessive-compulsive disorder (OCD), depression, anxiety, and attention deficit hyperactivity disorder (ADHD). As many as 1 in 100 people have symptoms of TS, yet the disorder is often misunderstood.
All funds raised by NJ Walks for TS will benefit the NJCTS Education Outreach Program which delivers professional trainings to educators and healthcare providers, anti-bullying and youth leadership training as well as college scholarships for high school students diagnosed with TS.
The annual 5K walk and family fun run has taken place in Mendham since 2010 and in Princeton/West Windsor since 2014. NJ Walks is designed by kids, for kids and is presented in Medford Lakes by the Heicklen family. Known as a day of “advocacy and self empowerment” on behalf of the 20,000 school-aged children living with Tourette Syndrome in New Jersey, the September 20th walk is part of NJCTS’s commitment to serving families and professionals in the region.
“We are pleased to bring this exciting event to Burlington County,” said NJCTS Executive Director Faith W. Rice, “Over the past decade, our outreach to schools, hospitals, and community organizations in South Jersey is making a difference in the quality of life for the TS community and has the potential to help children who have yet to be diagnosed and improve services to the children and families living with TS.”
“Since its inception, NJ Walks for TS has drawn support from state and federal legislators, sponsors, and the hundreds who attend to make the day a celebration of what makes us unique,” said Rice. “The focus here is that what makes us different makes us stronger—everyone has fun when we stand up for advocacy, awareness, and empowerment.”
Registration is $22.50 per person until September 1, when the price increases to $25 per person. To register, or to make a donation, visit www.njcts.org.