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Last year, while I was pregnant, I wrote about some of the thoughts that ran through my head, particularly about the possibility of genetically passing my Tourettes down to my baby. Apparently, I’m not the only one. I’ve had multiple parents write in to me, concerned about giving their children their disorder.
We know the pain that comes when someone tells you to, “stop that,” because they find our tics annoying. We hate the idea of our children being harassed by playmates, school peers, even coworkers one day because we know we won’t always be there to stick up for them.
I recently received a comment on my post, “6 Ways to Support Your Friend with Tourettes,” from a gentleman, stating his father used to hit him when he ticced because he thought it was on purpose. I know someone personally whose grandmother slapped him when he would tic for the same reason. Books like, “Front of the Class” by Brad Cohen, and “World’s Strongest Librarian,” by Josh Hanagarne record struggles that the authors go through even as adults that involve being thrown out of theaters and restaurants, and struggling to find a job with an employer who can see (or hear) past the tics.
As I type this, I’m watching Jelly Bean sleeping through the monitor. She turned 10 months old this week, and that kid already has my entire being wrapped around her little pinky. Her smile, her slobbery kisses, the sparkle in her eyes, the way she looks at me when I walk into the room makes me want to sob with joy, as well as fear. Like so many other parents with tics, I ask,
“If she inherits my tics, how do I watch her face the cruelty this world heaps onto those who are different?”
You will know that your child is already one step ahead of where you were because your child will have a parent who:
- will better know how to recognize tics if they appear
- will better know to bring her to her pediatrician to see if she needs a diagnosis
- can go to bat for him if he needs extra time at school, by requesting a 504 or educating his school staff about Tourettes (because believe me, not many people know)
- can share your tricks with him when he struggles to manage his tics in church, or to leave if they become overwhelming
- can understand and empathize when the tics strike, instead of embarrassing him for it or telling him to quit
- can help her siblings understand that she needs their support, not their jokes
- can teach him to self-advocate in situations where his disorder is misunderstood
- can teach him to educate others about his own condition
- can help him do his best to find employment where he can soar beyond people’s expectations
- can build her up so she’s less afraid to tell a significant other about her disorder
- can help him see that the world is still his…he’ll just have to come at it from a different angle than some other people
We want so desperately to promise our babies that they won’t struggle the way we did. But we can’t. What we can promise is to be their cheerleaders when they stumble, their voices when they can’t speak up for themselves. We can listen when they need to talk, and hug if they need to be held. We can let them know they’re not alone. We can help them learn management techniques that we’ve picked up over the years, and help them develop healthy habits like maintaining healthy diets and regularly exercising. We can make a list of tics and habits for the pediatrician so he knows which direction he should be looking in. We can show our children they deserve to be loved and respected like everyone else. We can love them, not in spite of their tics, but for who they are as whole, complete, real people. We can pray for them until our knees go numb.
Tourettes may have been Hell for your when you were young, but that doesn’t mean it has to be that way for your child. My parents made a world of difference in helping me see myself with the same kind of worth I saw in other people without Tourettes. You can do the same for your children, making their lives better than yours was because you, their parents, care. And that is exactly what our children need.
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 email@example.com. For more information about NJCTS please visit 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.”
EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. With just FOUR weeks remaining in this series, there’s a chance you missed one more entries from his exciting, revealing journey. You can read all of them here. For more information about Troye, please click on his name or visit his website.
It’s a quiet night in New York City — not a normal night, but a night that you think you can walk down the street and let out one of those tics. One of those weird and strange tics. Can you really walk down the street in New York and let out a barking tic without anyone noticing? Nope. No matter what there are still people out there.
Just when you think you’re alone and you fling your head around, or make some weird vocal tic, someone walks around the corner. You see the stranger look at you with that questioning look, asking themselves if they really saw or heard that. They subtly look at you to see if it happens again, and wonder what is wrong with you.
This is the point where you try to cover it up, a violent throat clear as if you’re choking on something, or maybe a swatting at your face as if there was some bug on your face. Did it work? Do they really believe the cover up, or do they just think you’re a crazy person?
We travel a hard and difficult road. As anyone with a disability, or something that makes them different, you can never really understand what they are going through. I can write and write about what is going on in my mind and body, but does that really put you in my shoes? Can you really understand what is going on in a body of someone with TS? Do you feel the fear, do you understand the embarrassment?
I don’t think someone will ever truly understand unless you have actually experienced it to the level of someone with TS. I can only put so much into words and on paper, but the truth lies inside me. The emotional and mental war that goes on inside me sometimes feels like an endless battle, but I continue to fight. I fight with my words and experiences in hopes to educate one person, but that’s only part of the war.
I might be able to dispel some of the stereotypes of TS in one uneducated individual, but I still have to battle what’s going on in my body. Education does not make my tics go away, it doesn’t calm the anxiety, and it is not going to rid the embarrassment I live with. I fight these battles alone.
To fight these battles I find new weapons all the time. It’s almost like a video game; if one weapon doesn’t work, I go into my arsenal to find a new better weapon that might do the job. So far, I have found some good weapons. The fish oil has been working great with my anxiety. It has not rid me completely of all my anxiety, but so far so good. I never thought that I could be or would be as anxiety free as I am today, but I do feel blessed by this.
After living with such anxiety for so long, it is hard to get used to being as calm as I am. I still am having difficulty dealing with the lack of anxiety in my everyday life. As I said last week, I have become much more laid back with my daily rituals. However, it’s a soothing change to not be worried about so much.
The world is not going to end if I wait until morning to put the dishes in the dishwasher, or wait an extra day to water the plants. It’s a beautiful thing to sit in bed for that extra hour and not worry about finishing everything that has to be done before I have to leave for work. If I don’t get it all done, there is always time to do it later.
One of the newest weapons in my arsenal is a combination weapon of acupuncture and Chinese herbs. Does this work? Is this working? I’m still not sure. My acupuncturist said it takes about four to six weeks to see a difference. As for the acupuncture, I have reached that six-week timetable, but I still have not seen any positive changes.
Last week I said that I felt as if my tics actually got worse after my session and actually may have had inflamed muscles in my back causing horrible back pain. I discussed that with her this week and we tried a new path in our journey. Instead of lying on my back and getting needles strategically place on my front, this week I laid face down with needles in my back.
In addition to the needles, she also used an ancient Chinese method of cupping which has been said to be an effective form of deep tissue massage. Did this new path work? Once again, I can’t say. By the time I had my appointment, the back pain was gone, but who knows, it might work in the long run.
I was able to reschedule my book release party this week for A Day in the Life of Tourette Syndrome because of the lack of attendees after the last book release. It was quite a success, and I was able to meet and talk to some of the people that I reached in my battle to educate. Just to hear how much they have learned from my words made everything I do worthwhile.
I know I can’t change the world all by myself, but I can get one step closer with each person I reach. I’m going to continue to reach out to people and educate them. If we all try in some way to educate someone, we will be one step closer to educating the world.
Until next week, “I’ll tic to you later.”
I’m sure at some point in our lives we have all come into contact with someone who has Tourette Syndrome. For those of you who haven’t, well, you have now. I have Tourette. I was diagnosed around age 9 in the fourth grade. Talk about trying to fit in. I never did ‘fit’ in, but looking back I’m glad that I didn’t.
To me, being able to live your life without the worry of upsetting a specific group of friends makes more sense, and quite frankly involves much less drama. I hate stereotypes, mainly because they give off false information that aggravates the person or group that you are stereotyping.
One stereotype that I get put into for having Tourette is that I cuss and say swear words. I have never done that. Tourette isn’t about cussing. In fact only 10 percent of people with Tourette actually cuss involuntarily (it’s called coprolalia):
1. If Tourette’s was only about swearing, I think I might actually enjoy it more. Getting to say whatever is on your mind simply because you cannot help it seems awesome, right? Well, it’s not. Try applying for a job. Who is going to want to hire someone who says “f— you” every two minutes? Not many. It’s not fun or funny. It’s humiliating. Tourette’s is about acknowledging society’s ignorance, and accepting that people are people. Now, I am not saying that I don’t ever catch myself stereotyping or judging people because I do. I mess up, and act impulsively, just like you because…well….I’m human also.
2. Have you ever been told to stop sneezing? Probably not, because most people know that you cannot control it. Imagine getting asked that when you go to order food at a restaurant because you are constantly sniffing, or are shopping in the local mall and you smack your lips all the time. It gets frustrating, but Tourette is about realizing people question everything, and that’s okay because it’s human nature. Honestly, if people didn’t question what I was doing, then I would get worried. It shows me that it’s human nature to be curious. By asking what I am doing, it lets them learn something new, and hopefully they can pass it along to others.
3. To me, Tourette is about learning to laugh at yourself and acknowledging that doing so is acceptable. If you can’t laugh at yourself, then people are going to assume that your Tourette is a weakness for you. Yes, at times I would enjoy a little break, but in the end I am a stronger, more intelligent person because of my ability to embrace what would be considered a weakness.
4. My Tourette has allowed me to appreciate differences in people. It’s taught me to not only be more accepting of myself, but also of others. You never know what anyone is going through until you have been in their shoes. Having Tourette has given me a way to see the world in different ways. I aspire to learn about others, so that I can learn about myself. Aren’t we all connected? Don’t we all deserve dignity and respect?
You see, I don’t want sympathy from people, or to hear, I’m sorry, that must suck. Yes, at times it does suck but you know what? I am alive. I have a house, and wonderful parents who have provided me with a life of happiness, so if the worst of what I must go through is to have this disorder which in turn has only made me a stronger individual, then I am grateful. I am grateful that I do not have to wake up in a hospital bed, or out on the streets. I’ve been blessed, even if that blessing seems hidden at times.
Embrace your differences. If each of us were the same, this world would be dull and boring. Be curious without being cruel.
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.
Sophia talks to Tourettes Action about her experiences of living with TS and what it means to her.
For me, Tourette’s made its appearance a little later than usual. I was 16 and had just been diagnosed with autism spectrum disorder, OCD and depression. Antidepressants were prescribed to help me manage my anxiety.
One morning, I woke up and was no longer in control of my body movements, my arms and legs were doing exactly what they wanted to, as if they were not a part of my body. I kept making noises, barking and meowing. I couldn’t stop. The inside of my body felt as if there were ants running inside me, combined with a strong burning sensation, a building tension that reduced ever so briefly, but only after a ‘tic’.
From that day, my tics became more complex and at one stage the movements were constant. I shouted things out and repeated other people’s words, phrases and actions. A constant feeling of unease, not knowing what was going to come out of my mouth until it had been said. Not only did I have to adjust to my new situation, I also had to accept the stares of onlookers, many of whom had only ever seen Tourette’s in the media.
Unfortunately, the media often has a tendency of over focusing on the ‘swearing tic’, known as coprolalia, which only affects a small number of those who have Tourette’s. “I wish I had Tourette’s so I could just swear all the time” is a phrase that I’ve heard more times than I would have liked to. Coprolalia is involuntary and certainly not something Tourette’s sufferers enjoy having, nor do they use it as an excuse to swear.
Tourette’s is more than just tics, many of us have multiple co-occurring conditions that have their own symptoms. Although Tourette’s is manifested outwardly, sometimes it is the symptoms people can’t see that cause us the most problems.
Two years passed, along with lots of hospital visits. Tourette Syndrome was mentioned throughout, but my official diagnosis was given to me at the age of 18. Now, I am studying Psychology at University. My tics change in frequency and severity, new tics emerge and old ones return. I have slowly learnt to accept my conditions and I am fortunate in that I am surrounded by wonderful people, who are incredibly supportive.
I think it is important to educate and challenge the stereotypes. To become your own advocate and to embrace what Tourette’s has taught you. To those reading this who have Tourette’s themselves:
“Keep Calm and Tic On!”
THIS WEEK’S WEBINAR
Making Sense of Sensory Issues – How to manage heightened senses at home and in the classroom
February 25, 2015
Presented by Dr. Michelle Miller, Psy.D., a New York State-licensed clinical psychologist who works at Therapy West, a group practice in Manhattan, and as post-doctoral fellow in the Tourette’s Syndrome Clinic at Rutgers University in Piscataway, N.J.
Over the years, parents and teachers have been increasingly attending to childrens’ sensory-related struggles; however, understanding and supporting sensory problems still remains unclear for so many people who work with children. Research also has suggested that 1 in 6 children are significantly impacted by sensory issues, further highlighting the need for this area to be addressed. This webinar is aimed at exploring what sensory issues are, how they look in different children and adults, and what can be done — both at home and at school — to help children with sensory issues thrive.
As a mother of a child with Tourette’s Syndrome, I find myself asked questions a lot about Kane, his tics and methods that we use to help him. I love helping people to better understand Tourette’s; however, there is always someone who tries to disprove TS or to try and weigh in an opinion when they have not done their research.
Today, I was faced with this. I have been Kane’s mother for 10 years — I know this child better than anyone else in his life. I know what tics he has, how he acts when he is having a rough day and when he is being a total stink pot. To be approached by someone who tries to make me feel less educated than they are and throw out words they do not even understand about a disorder they know nothing about, really gets under my skin.
If you are not sure about the syndrome, ask questions, I would love to answer them the best I can. After all, I have done many hours of research, lived with an individual who is affected by TS and been to many sessions with my child. Please, don’t be rude! 🙂