One Week Left to Team Up with Tim Howard

Soccer superstar Tim Howard comes home to NJ to inspire fans and give a boost to his Leadership Academy with the NJ Center for Tourette Syndrome on June 4th. Visit njcts.org for tickets.

Soccer superstar Tim Howard comes home to NJ to inspire fans and give a boost to his Leadership Academy with the NJ Center for Tourette Syndrome on June 4th. Visit njcts.org for tickets.

Soccer superstar Tim Howard will join fans of all ages to discuss his accomplishments on the field and share his inspirational message of resilience in the face of Tourette Syndrome.  Tickets are available at NJCTS.org for Team Up with Tim Howard which will take place Thursday, June 4 from 3- 5 p.m. at Rutgers University’s Yurcak Field in Piscataway.

Tourette Syndrome (TS) is a neurological disorder characterized by involuntary sounds or movements known as tics. It is estimated that 1 in 100 children show symptoms of the disorder with as many as 20,000 school-aged kids in New Jersey alone. TS is frequently accompanied by attention deficit disorder, obsessive-compulsive disorder, depression, anxiety and learning disabilities.

Team Up with Tim Howard is hosted by the NJ Center for Tourette Syndrome (NJCTS) and Rutgers Men’s Soccer. The event serves as a kickoff for a year-long awareness campaign to benefit the NJCTS Tim Howard Leadership Academy, a four-day intensive program in August for teenagers focusing on empowerment, self-leadership, advocacy skills and resilience.

An integral partner of NJCTS since its founding, Howard will speak about soccer, his experience playing in the World Cup, and living with Tourette Syndrome (TS). Howard was diagnosed with TS as a child and has since brought TS to the world stage. “I have made it my goal to debunk the myths and bullying that come with the disorder,” said Howard. “I have found that one of the best ways to do this is to educate people.”

After the opening ceremony, the Rutgers Men’s Soccer Team leads a clinic for kids (all spots are now filled), DJ Yoshi rocks the turntables, the Rutgers University Dance Team performs, and Tim Howard will sign copies of his book, The Keeper: A Life of Saving Goals and Achieving Them.

Pre-registration is suggested for Team Up with Tim Howard by visiting NJCTS.org. Admission is $10 per person. Onsite registration will take place starting at 2 p.m. at Yurcak Field on June 4th. Attendees are asked to arrive at the event between 2:00 and 2:30 p.m. Anyone under 17 must be accompanied by a ticket holding adult.

To secure your spot at the Team Up with Tim Howard event and for more information about NJCTS and the Tim Howard Leadership Academy, please visit www.njcts.org or call 908-575-7350.

Team Up with Tim Howard is sponsored in part by

 

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.

Free range me

Well, my kid made it to Arizona safely. Shockingly enough, I didn’t spend the entire vacation without him in an anxious mess. Sure, I breathed a sigh of relief when I knew his plane landed safely, but that was about it. The few days without Stink included lots of cherished time with Pip and her dad.

We all stayed up late a few times, curled up on the green couches with books akin to those fat fluffy seals sunning themselves on rocks at the pier. (I’m currently reading Anne Lammot’s Grace, Eventually and just laughing out loud. That woman is brilliant and about as neurotic as I am. Though I have better hair. Sorry, Anne.)

The day after he left, I had tea with Tuskany. While Pip and her daughter swapped books in the next room, Tuskany quipped that I had some free-range parent characteristics. I had to laugh, because in many ways, she’s not wrong. I didn’t check Stink’s luggage. (For all I know, he could have loaded up that suitcase with Twizzlers, pens and porn.)

I didn’t even know who is parent chaperone was until I arrived at the airport that morning, groggy and disheveled from lack of coffee and sleep. In stealing kisses from my man-child and reminding him to brush his teeth at least once on the three-day trip, I forgot to ask for the chaperone’s phone number. I reckoned to myself that if he needed to get in touch with me, he could take my advice and ask another parent to use their phone.

I’m not sure how you would handle this. I do know that Tuskany would never operate in such a manner. She is truly one of the best parents I know. She has this responsible thing down pat, and her daughter, well, she’s a genius. Even Stink thinks so. (After Disneyland a few weeks back, he turned to me and said, “Mom, Nadia is the smartest girl I ever met. And she’s only in THIRD grade. Um… I think she’s smarter than me!” To which I responded, “She is smarter than you, kid!”).

I’m certain that this wunder girl’s mother would not only be sure that her daughter had her own phone, she would not be on a plane with a bunch of rag-tag public school kids going on an excavation. (I’d tell you the places they went, but I lost the itinerary before we even got to the airport. Something with rocks and deserts and Indian caves with the name Canyon tied onto the end for the tourists.)

The thing is, though, I just knew he’d be fine. He was surrounded by teachers and parents. (Some of the parents I even had cell phone numbers for and they sent me pics!) I just didn’t worry about it. Here’s one from someone who, thank God, was kind enough to show me how much Stink was enjoying the culture on Day 1.

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Teen Tommy Licato gets June 4 proclaimed as Tourette Syndrome Awareness Day in South Plainfield

PHOTO BY VICTORIA CARUSO/TAP into South Plainfield — South Plainfield High School student Tommy Licato accepted a proclamation declaring June 4, 2015 as Tourette Syndrome Awareness Day from Mayor Matt Anesh.

The mayor of South Plainfield, N.J., Matt Anesh, has announced that Thursday, June 4 is Tourette Syndrome Awareness Day in the borough and presented a proclamation to South Plainfield High School student Tommy Licato.

An inherited neurological disorder, Tourette Syndrome (TS) affects 1 in 100 children and there are more than 20,000 school-aged children in New Jersey dealing with TS. Characterized by “tics,” TS can strike people of all ethnic and racial backgrounds and although medication came help there is no standard treatment or known cure for this disorder.

“It is important to increase awareness, understanding and support for individuals and families affected by TS as well as the individuals and organizations that are committed to promoting education and awareness about TS to the general public, healthcare community and educational institutions,” said the mayor. “…Tourette Syndrome Awareness Day is a special day to promote understanding, compassion and acceptance for all our fellow citizens who deserve and need our support to break the stigma related to Tourette Syndrome.”

Read the full story here at TAP into South Plainfield.

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

Tourette Syndrome Awareness Month is finally here!

Tourette’s Syndrome Awareness month is finally here!! Today Kane and I will be speaking with his class! Also, so many amazing supporters in our community as well as surrounding communities will be wearing teal to show their support for Kane and TS Awareness!

So if you’re reading this, would you #weartealforkane?! 🙂

 

Youth Advocates continue to spread the word about Tourette Syndrome across New Jersey!

Congratulations to NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) Youth Advocate Mike Hayden, who spoke with confidence and elegance about Tourette Syndrome to more than 200 third-, fourth-, and fifth-graders at the Bryan Elementary School in Cresskill, N.J., this afternoon.

I joined Mike for this incredible presentation, along with the school counselor, Superintendent Michael Burke, and our generous NJCTS supporter, Caryn Aronson, who organized this week’s presentations.

For more information about Tourette Syndrome the Center and its Education Outreach Program, please visit www.njcts.org or call 908-575-7350. You can also read more about presentations like this on our Facebook page. “Like” us today!

The Tics are Completely, 100% Gone…

…because Stink is on a trip. Yes, my big 6th-grader got on a plane yesterday with his class to hike the grand canyon and go on an archaeological dig. Not a bad scenario for a public school, eh? The most exploring I ever did in 6th grade was to go from one window of paned glass to the next for Stations of the Cross in our Catholic church. I’m thinking Stink is going to have a lot more fun.

Update on Tics

In case any of you are irritated at my false proclamation in the title, I will give you some hope that his tics have been dramatically reduced regardless of the Taurine being eliminated. I believe that the magnesium citrate and the NAC are our miracle workers. Frankly, I think it’s mostly the magnesium and not the NAC but I’m not willing to take that chance right now. I’ll do a supplement post next, but for now, I just want to talk about my 12-year-old. Why? Because he’s 12. And it is going by so fast. As I said in my post for my publishing company, Armonia, I only have 5 Christmases left with this kid.

That’s astounding. How many times have complained to him, “Put away your Wii system when you’re done with it?”

game

“Really? Do I have to remind you again that the table is for eating, not for your gaming obsessions?”

remotes

“Um, the chargers and the homework and the key chains and the Disney pins… can you please put them away?”

school shit

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52 Weeks of TS: Week 52

EDITOR’S NOTE: Over the past year on Tuesdays, noted Tourette Syndrome advocate Troye Evers has shared his “52 Weeks of TS” blog journal with the TSParentsOnline community. This is the LAST week of this series, so there’s a chance you missed one or 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.

Is it really here? Have we reached the 52nd week of this series? From doctor appointments to social events, from new tics to new jobs, I have expressed it all and I have learned and grown from the whole experience. I’m sad that I have reached the end, but excited for what will come in the future.

But I’m still led to ask, “Why do I do this to myself?” Why are there certain occasions that I still let fear and embarrassment rule my life and cause me to be this untrue version of myself? The answer is easy, it’s those judging eyes. It’s much easier when you’re dealing with a one on one situation, but when you have a room full of people looking at you, staring at you, judging you, it can be hard.

It brings me back to my school days, sitting in the classroom and having all my peers and teacher looking at me. The only difference now is that I have an explanation. I know what to say to someone who asks that dreaded question, “Why are you doing that with your head?” but there is still that fear of people asking.

The rest of the week went well, but just more running around and very little time to rest. Besides working, I also was planning a  dinner for my co-workers. I have OCD, and for some reason I think it would be a good idea to invite 10 people over to my house for dinner. Do I really want 10 people walking around my safe zone, spreading germs, making messes, and moving and touching my stuff?

Well, I guess it’s too late. I opened my big mouth. Having a dinner party with this amount of people takes a lot of planning and organization, which is fine with my OCD and anxiety disorder. However, did I really need to set the table a week before the party? Yep, a week before hand. My husband questioned me about why I set it so early and I explained to him that I did not have time during the week to do it. Really? The truth is I’m OCD. I had to set it up early enough so I would know it was perfect. Everything had to be in the right place, and I needed to make sure it was all organized correctly.

Despite all my OCD’s the dinner went very well. Normally with an event like this, I would have asked everyone to take off their shoes as not to spread the germs of the NYC streets all over my apartment, but I was not able to do this. About 30 minutes before everyone arrived, my husband shattered a glass top to a casserole dish. The glass flew everywhere. Besides the kitchen, I found glass in the hallway and living room. We tried to clean it all up, but I knew there still might be a piece somewhere. Now the decision has come. I would much rather the germs of NYC in my apartment than the chance of someone’s blood.

How does my mind go to this extreme? Am I really OK with dirt from the streets on my floor, but not blood? I mean I could always mop the floor and sanitize them to clean up the dirt, but what if the blood touched me? OK, I know it sounds insane, but for me blood leads to death. What if someone has some deadly disease and they cut themselves and then I cut myself? OK, it doesn’t sound insane, IT IS INSANE!

Basically, what I’m saying is that a broken glass in the kitchen will lead to my death. Are you kidding me? I know I need to calm down about some things, but this is how I am. Everyone came over and we had a delicious meal (and everyone kept their shoes on, so I’m glad to say the grim reaper will not be making a stop at place anytime too soon.)

As I reached the end of the week, I reached the end of this series. It’s been a wonderful year, and I achieved my resolution. I reached out to so many people and educated many of them. I opened my mouth and through my words, I learned more about myself. I think my resolution for the year to come is to not be afraid. To be myself.

The end.

“I’m gonna have more friends now” because of Youth Advocate presentation in New Jersey

Last week, my daughters Anna and Sarah gave a TS Youth Ambassador Presentation.  Like all of the ones they have given before, I sat in the audience and watched the faces of the kids as they learn about TS.  They have given well over 20 presentations, and each one has been a success.

The girls talk about TS, what it’s like to live with it and how important it is to treat people with respect. Then, they do a quick activity to let the kids have a chance to see how hard it is to do work when you have TS. (We love watching the teachers try and do this also!) At the end, there are always questions from the students. This is my favorite part because this is when I can watch the stereotypes get washed away.

The questions asked show that the kids are really interested and want to learn more about it. My children have not been bullied about their TS.  Mainly, I believe, because of the fact that they take the time to educate their peers about TS.

This presentation was given because there is a child in the school with TS who has been having a hard time.  The kids get to ask the girls questions about TS and not worry about hurting their feelings or seeming rude.  This opens up the dialogue for the kids in school.  All of the children are given a “TS Fact Sheet” to take home so that the parents can continue the discussion.

Anna and Sarah know that they are doing good things by speaking about this, but yesterday, they were able to see it with their own eyes.  After the presentation, the child for which it was given came up and met the girls.  After talking with them for a couple of minutes, he said, “I think I’m gonna have more friends now because of you”.  His mother sent me a picture of his daily journal: