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

Celebrities with Tourette Syndrome: Stories

If you or anyone of your loved ones were diagnosed with Tourette Syndrome, it doesn’t mean that either you or your family members can’t lead a normal life. Tourette disorder is not a death sentence neither it is disability, in fact, you can live a long and happy life and even leave a footprint in the history as a successful person.

In proof of this statement, below is the list of people who managed to become highly-successful while diagnosed with Tourette.

  • David Beckham. David Robert Joseph Beckham, a world famous English footballer (soccer player) admitted to have OCD (obsessive compulsive disorder) and Tourette Syndrome early in his career. He wants and needs everything to be perfect. Before Mr. Beckham can relax, he has to put everything in a straight line or in pairs. While diagnosed with OCD and Tourette David Beckham managed to win league titles in four countries and play for outstanding clubs like Real Madrid, Milan and Manchester United. Overall, during his career he played 741 games and scored 129 goals. He is also known as a fashion icon and a wonderful husband and father of 4 children.
  • Mahmud Abdul-Rauf.  Abdul-Rauf is a former basketball player known throughout the world for his most accurate free-throw shooting records. Mahmud has been suffering from Tourette Syndrome since he was a kid. His body tics are quite noticeable even during a game. While a lot of people discussed and even bullied him at first, Mahmud talked openly about him having Tourette and even emphasized that Tourette made him seek perfection in everything and achieve the great results he has. Mahmud Abdul-Rauf had a successful 9 years career and is still recognized as one of the greatest basketball players.
  • Howie Mandell. Howie Mandell is a famous comedian, brains behind several TV shows and a recognizable host of “America’s got talent”. His condition is similar to David Beckham, Howie is seeking perfection in everything. He even has two houses, one of which is aseptic, as he is also suffering from germophobia, which turns into severe tics. One of the 100 best comedians of all time, Howie has been very open about his condition and is sure that it hasn’t hold him back in his career and success.
  • Howard Hughes. A billionaire, innovator and an outstanding aviator, Howard Hughes, was also suffering from Tourette syndrome. His “eccentricities” as well as germ-obsession didn’t stop him from being one of the richest and most successful people on Earth. He is remembered as an unusual director and producer of Hollywood movies as well.
  • Dan Ackroyd. Famous Canadian actor was diagnosed with Tourette syndrome and Aspergers at a very young age. When he was a kid, he suffered from body and vocal tics and he could often hear voices. Fortunately, most of his symptoms were subsided by the successful therapy treatment when he was 14. Dan Ackroyd built a great career on television: he was a cast member of Saturday Live Show and he also starred in several movies like “My Girl”, “Ghostbusters”, “The Blue Brothers” etc.

P. Green is an author of “Celebrities with Tourette Syndrome: Stories”. Right now she works as contributor for the Android app for parents at Pumpic.

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.

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UPCOMING WEBINAR: February 25 on Sensory Issues at Home & at School

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.

REGISTER FOR THIS WEBINAR »

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Discrimination, Bullying & Isolation In A World of Inclusion

This is going to be one of the hardest articles I’ve ever written. The reason for this is because it is deeply personal. I write about bullying and discrimination often on my own blog, and I understand it all too well. I see it everyday, in all walks of life.

“People fear what they don’t understand and hate what they can’t conquer.” ~ Andrew Smith

Everyone in this world has bullied or been bullied at some point in their lives. Any time you exert will and force on someone to get a desired outcome, this could be defined as bullying. I am guilty of it. In my quest to have the perfect IEP for my son, I have expected knowledge and wisdom of my son’s disabilities greater than my own.

This has been my life for the past 9 1/2 months. I didn’t even realize I was doing it until someone said these simple words: “You’ve had two years to understand your son’s Tourette Syndrome. His teachers have had eight weeks. And I’m sure you don’t fully understand it at times.” In a very odd way, my attempts at advocacy for my son in school can be viewed as a type of bullying. I admit I have been forceful in my attempt to do the best for my son, and at times the lines may have blurred between right and wrong ways to go about that.

“A lot of people are afraid to tell the truth, to say no. That’s where toughness comes into play. Toughness is not being a bully. It’s having backbone.” ~ Robert Kiyosaki

Those words affected me in a huge way. My son’s teachers are with him seven hours a day. When I say teachers, I mean the entire school staff, whether they are certified or not. These are people who have been placed in an educational environment to help children succeed. They have hundreds of decisions they need to make on a daily basis. We expect them to make the right choices constantly. But they can and do make wrong ones. They are only human.

Unfortunately, teachers are put in impossible situations all the time with disabled students. When I hear about my son calling out in class, or being disruptive, I sometimes wonder what would happen if a non-disabled student did the same thing. Chances are, with my son’s IEP, he would receive a gentle warning followed by a positive reinforcement statement. For a student without disabilities, the reaction may be different. Is this fair to this type of student?

“I know the world isn’t fair, but why isn’t it ever unfair in my favor?” ~ Bill Watterson

This makes me question humanity itself. We will give one type of treatment to a group of people because we are required to, but not another. Some teachers will utilize the techniques they see in an IEP with the entire class. But for those who don’t, I can see how some students and parents could see this as a type of favoritism or preferential treatment. I think, in an odd way, this creates a bizarre type of resentment against students with disabilities.

Students certainly pick up on it. I can see the conversation already: “Johnny threw a pencil and he was talked to and nothing else happened. When I did it, I had to go to the principal’s office.” For this student, something complex happens. He sees Johnny doing things and gets away with it, but for others they get in trouble. Students, especially those in elementary and middle school, are shaped by those around them. They expect everyone to get the same treatment.

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UPCOMING WEBINAR: January 21 on Habit Reversal Therapy

THIS WEEK’S WEBINAR

Creative Applications of Exposure Therapy and Habit Reversal Therapy

January 21, 2015

Presented by Dr. Joelle Beecher-McGovern, a clinical psychotherapist at the Child & Adolescent OCD, Tic, Trich & Anxiety Group (COTTAGe) in the Department of Psychiatry at the University of Pennsylvania School of Medicine.

Cognitive-behavioral therapy has strong experiential support for a number of psychiatric disorders among children and adolescents. It includes several treatment modalities, including exposure therapy for pediatric anxiety and habit reversal training for tic disorders and trichotillomania. Despite the strong evidence for these treatments, they can be difficult for children and families to implement for a number of reasons, including logistical barriers, motivation issues and difficulties with follow-through in out-of-session work.

In this presentation, Dr. Hilary Dingfelder will briefly describe these treatment modalities and discuss some of the practical issues associated with implementing these treatments with children and adolescents. Dr. Dingfelder will then discuss some creative applications of these strategies to enhance these treatments for children and adolescents. Examples of areas that will be covered include:

  1. How technology can be used to supplement treatment (e.g., using the smart phone to monitor progress or supplement exposures)
  2. How to strengthen reward plans to improvement motivation
  3. Creative ways to enhance exposures with young children (e.g., through the use of games and puppets).

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Happily Ticked Off — The Book, Part 2: More introduction

Here is the second part of the introduction from my book “Happily Ticked Off” for you to read if you’re interested. I hope to share more with you on this book’s progress, my writing progress and my kid’s crazy life in 2015.

As always, I’d love to hear from you, too!

TOC

Introduction, Part 2

Self-Esteem

Many of you will opt for a more natural route to easing tics, but worry about your child’s self-esteem while you work out a game plan. You don’t want him teased. Your heart breaks that some nasty kid will poke fun at his arm thrusting tic.

I understand your concern. I was crushed at the prospect of some bully tormenting my baby. But I set my emotions aside and focused on a more important reality: Cruel kids are going to tease other children whether or not those children have tics.  My son’s heart, character and personality would define him, not his tics. (Chapter B)

“That’s easier said than done,” you might wail.

To that I will respond with a resounding, “Duh.” But with practice, you’ll learn to focus on your child’s strengths, not his tics.

Mild Tics/Mild Annoyance

If your child has mild tics, there’s a good chance he doesn’t notice them or isn’t bothered by them.

This last statement is hard to believe, but it’s true. Your kid might be happily watching Spongebob, coughing like a bronchitis stricken seal six times a minute, and his only complaint at the end of the show will be, “Mommy, I could really go for a bologna and cheese sandwich.”

Your Child’s Life Is Not Over

To highly tuned-in mamas like yourselves, your children’s inability to be affected by tics is baffling, because every minor gulp, throat clear and tongue click will be magnified into LOUD! RICOCHETING! EXPLOSIONS!  They will boom like a fog horn in your ringing ears, taunting you that “Your child’s life is O-V-E-R.”

Your child’s life is far from over. Tics or TS is not a death sentence. The only thing that needs to die is your old vision of what you thought your child’s life would look like. He can experience as much success as a non-ticking child. 

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UPCOMING WEBINAR: November 12 on getting kids motivated for school

THIS WEEK’S WEBINAR

Getting Kids Motivated for School: Strategies to foster your child/teen’s motivation to achieve in school

November 12, 2014

Presented by Dr. Graham Hartke, is a licensed psychologist in private practice in Roseland, N.J.

As our schools continue to increase curriculum, testing, and workload standards, many kids and teens are struggling to stay motivated in school. These are students who do not like school, struggle to complete homework, procrastinate often, have slipping grades, are bored, say they “don’t care about school”, avoid school work, get in trouble, are disorganized, and/or feel disconnected from classroom learning.

This webinar focuses on strategies parents and educators can use to increase student motivation to succeed in school. Strategies will address the causes of low motivation, learning difficulties, improving the homework process, improving organization, and reducing procrastination.

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OTHER UPCOMING WEBINARS

 

Bullying & Vulnerable Populations

November 19, 2014

Presented by Nadia Ansary, Ph.D.

More information about this webinar »

Monsters, Robbers & Nightmares, Oh My! Simple Ways to Improve Your Child’s Sleep

December 3, 2014

Presented by Courtney Weiner, Ph.D.

More information about this webinar »

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List of all NJCTS webinars, including October 29 on mental health in the African-American community

THIS WEEK’S WEBINAR

Mental Health Stigma in the African-American Community

October 29, 2014

Presented by Dr. Christine Adkins-Hutchison, Associate Director of the Office of Counseling and Disability Services at Kean University in Union, N.J.

Asking for help of any kind can be difficult. Seeking psychological services can be even more challenging. For many in the African American community, acknowledging the need for help and pursuing assistance in many forms, especially in the form of counseling, can feel next to impossible.

This webinar will discuss the stigma regarding help-seeking and mental health issues that persists in this ethnic community. How to recognize the need for support, and ways to encourage help-seeking in this population also will be considered.

REGISTER FOR THIS WEBINAR »

OTHER UPCOMING WEBINARS

Getting Kids Motivated for School

November 12, 2014

Presented by Graham Hartke, Psy.D.

More information about this webinar »

Bullying & Vulnerable Populations

November 19, 2014

Presented by Nadia Ansary, Ph.D.

More information about this webinar »

Monsters, Robbers & Nightmares, Oh My! Simple Ways to Improve Your Child’s Sleep

December 3, 2014

Presented by Courtney Weiner, Ph.D.

More information about this webinar »

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My kid? A bully? Handling the unexpected

Bully

Stink has never been shy on friends. I mean, never. This kid can be ticking like a clock on crack, walk into a party of dwarfs speaking Chinese, and come out with three new buddies (along with a fistful of twitch-inducing fortune cookies).

Unlike me, however, he doesn’t hand-wring over situations that aren’t working for him anymore. Sometimes he’ll play with the neighbor kid every day for two weeks. Then a month goes by. “Tyson was cheating at Pokemon,” he’ll say. “I told him to not come back until he stops trying to steal my Pikachu cards.” Before long, they are playing basketball on the corner.

Stink doesn’t obsess over what another kid thinks, says or act. It doesn’t mean that he has an unkind heart – far from it – but he’s not going to walk on eggshells around someone. Nor is he going to let someone walk on him. For those who operate in life out of a wounded life-script, his character could be perceived as selfish. For others with a healthy dose of self-esteem, Stink is seen as a leader with boundaries.

I am slowly getting on the Stink train, but it hasn’t been easy. Because I am a very “out there” person, my pattern in the past was to attract people who weren’t as out there. I represented a bit of sunshine for their shadow, and – due to my generous nature  – I was more than happy to spread some light.

Lest I sound like an ego-maniac, that was pretty stupid and self-righteous on my part. After some good old-fashioned silence, prayer and self-reflection, it was clear that I subconsciously felt the need for cheerleaders. I knew in my soul who I was (what everyone saw in my writer voice) but in real life I needed more support. There’s nothing wrong with friends who bolster us as we find our true identity in this wonky world, but ideally, it’s from people who are on the same level as we are, if not higher.

If not, we’ll get less than professional cheerleaders who are insecure about their own pom-poms. In my case, these insecure cheerleaders would turn to me for emotional support  (after all, they had been there for me ). Having the tables suddenly flipped, I didn’t want to cheer for them, because it felt wrong. I didn’t want to cheer for insecurity and woundedness. I’d back off to keep from being bitten.

Instead of then putting on my cheerleader uniform them, I’d become a professional flag girl. “Red flag! Red flag! Run!” I’d clumsily extract myself from the friendship.

On one hand, you could say I was practicing healthy boundaries. But in reality it was years too late for that. One person even called me a bully. Ouch. Adding more sting to the wound, I felt bad for them feeling bad. Sure, I did not want to be in an unhealthy friendship, but hurting another person (even though it was their insecurities, not mine) made me feel awful. Can we say “Co Dependent for 500?”

Back to Stink and his friendships. As life would have it, he picked up a new buddy last year. I loved Darren.  He seemed very sweet and kind. They had many video game and pizza fests. His folks told me how great Stink was – that Stink was the “first friend” this kid had. I felt honored that my kid was not like the other boys at school who made fun of Darren. He was confident enough in himself to befriend a kid who wasn’t part of the jock crowd.

Cut to this year with no word from Stink about Darren. I asked him about it, and Stink said “We just don’t have a lot in common.” I sensed something was amiss, but let it go. After all, Stink doesn’t have to be friends with everyone he’s ever met. At least Stink has boundaries, unlike his mother.

But when I saw this kid’s parents at the bowling alley today – who I could tell would rather avoid me – I approached the mom. (I don’t do passive well.) I cornered her in the arcade and told her I was sorry the boys weren’t hanging out. She said it was “fine… kids drift…” but she looked sad. “Really? That’s all?” I asked. She then alluded to some play yard incident where her son was being ganged up on.

She said, according to Darren, that “Stink didn’t defend him and that really hurt his feelings. It wasn’t the Stink Darren thought he know.” Her son was hurt, and so was she. At that point, so was I. “Why didn’t you call me?” I asked her, very calmly. “I didn’t want to be the crying mom,” she said back before heading out to find her husband in the parking lot.

Ugggg.

After extracting tokens from his hands and making him dump the remainder of his tic potion Pepsi in the trash can, I asked him about it in the car. The upshot of our conversation was that he would talk to the kid at school in the morning. It also meant a note to the parent. Curious what you think:

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