Applications for 2015 Tim Howard NJCTS Leadership Academy accepted through January 30!

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The Tim Howard NJCTS Leadership Academy is a four-day program that takes place in state-of-the-art dormitories on Busch Campus at Rutgers, the State University of New Jersey in Piscataway. The 2nd annual Leadership Academy will take place August 6-9, 2015, and applications are available now for this incredible opportunity and will be accepted through Friday, January 30.

Participants will work, play, eat and sleep at Rutgers and enjoy a wide range of activities, such as:

  • Interacting with doctors, psychologists, and other experts in the field to learn more about Tourette Syndrome!
  • Being a part of large group discussions and small group discussions with other teens and young adults with TS. You’ll hear their stories and have opportunities to share your own!
  • Participating in a variety of recreational activities, ranging from swimming, sports, yoga, games, team-building activities, movies, singing, and more!
  • Forming friendships and connections with other participants, and meeting successful young adults who will serve as Coaches, guiding participants through the weekend’s events!

Guest speakers include leading experts in their field, all of whom have extensive knowledge of TS, and you’ll learn more about TS from a variety of different perspectives, including the biology of TS, the psychology of TS, and how TS affects people socially.

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New Jersey teens: Are you a high school senior with TS? Yes? Then apply for a scholarship!

The NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) is proud to annouce the 2015 scholarship awards to graduating New Jersey high school seniors diagnosed with Tourette Syndrome.

The NJCTS Children’s Scholarship Program was established in 2004. Over the past 11 years, NJCTS has awarded more than 200 scholarships to graduating high school seniors in every corner of New Jersey. In 2014, 19 students were awarded scholarships by NJCTS.

To view the 2014 winners and other past NJCTS Children’s Scholarship essays,   please click here. A scholarship award recipient must:

  • Download/print out, complete and return the application form by May 1, 2015
  • Be domiciled in the State of New Jersey
  • Be a high school senior in a private, public or home school
  • Be planning to attend a college or trade school on a part-time or full-time basis in Fall 2015 
  • Have a diagnosis of Tourette Syndrome
  • Provide a record of grades from 9th grade to present
  • Provide letters of recommendation from a member(s) of his/her school staff (such as teacher or guidance counselor), coaches (who have known you for four years or less) and/or community people who know you well (church or other community members)
  • Submit an essay of 1 to 2 pages, typed and double spaced, describing how Tourette Syndrome has played a part in your life. You may also submit media (pictures, video, music) displaying your talent(s) no more than 5 minutes in length.

The winners will be selected based upon academic achievement, community involvement and accomplishments as an individual living with this challenging and complex neurological disorder. The amount of the prize, criteria and selection of the winners shall be in the sole discretion of NJCTS, which reserves the right to determine the amount of the award and whether to award it based upon the applications.

Winners will be announced in June following a review of all applications by the NJCTS Children’s Scholarship Committee, they will be notified by mail.

The winner also must agree to having his or her essay published here on the Teens4TS blog; appear in local media publications and on www.njcts.org, if applicable; speaking to local students about Tourette Syndrome, if deemed necessary; and attending meetings with state and federal legislators, if necessary. Winners also may have NJCTS present the scholarship award at their school’s year-end awards assembly/banquet.

Tourette’s and OCD, Cousins or Siblings?

I have yet to meet another person with Tourette’s who does not also have at least one comorbid condition. For me, there has not just been one, but at least three of these ‘cousins’ as they are frequently called.

There are so many disorders and syndromes that are so closely related and occur simultaneously that I could not possibly begin to list them all. the symptoms of some disorders are so similar that it is easy to mistake one for another. There are many people who go misdiagnosed because of this. This is why comorbid conditions are often referred to as “cousins”, because they are so similar and closely related, just as members of a family might be.

I have family members who have been mistaken for each other either because they sound like the other person over the phone or because they look so much alike that someone who has not seem either one of them in a long time mistook one for the other. For example, when my sister and my cousin were younger, people mistook them for sisters rather than cousins when they were together. My sister has always looked as though she belonged to my aunt rather than my mother.

Obsessive Compulsive Disorder (OCD) is one of the conditions that can co-occur with Tourette’s. A person with OCD has obsessions and compulsions. Basically, you have an obsession, a thought that will not leave and causes you anxiety, and the only way to relieve that anxiety is to carry out a compulsion. The obsessions and compulsions can consist of a variety of things.

Everyone forgets what day of the week it is once in a while. At least, I think everyone does that once in a while. I’m really hoping it’s not just me. For me, though, it causes this anxiety and I think, “Oh my gosh, I thought today was Saturday and it’s really Friday. What if I forget what day it is tomorrow and something bad happens because I forget what day it is and forget to do something or go somewhere?”  Actually, it feels a bit more like this as it goes through my head,

“OHMYGOSHITHOUGHTTODAYWASSATURDAYANDITSREALLYFRIDAYANDWHATIFIFORGETWHATDAYITISTOMORROWANDSOMETHINGBADHAPPENSBECAUSEIFORGOTWHATDAYITISANDFORGETTODOSOMETHINGORGOSOMEWHEREORSOMETHINGLIKETHAT!?!?!?!?”

To relieve the anxiety caused and keep ‘imagined bad thing that will happen because I forgot what day it was’ from happening, I repeat this over and over in my head or even out loud if it feels necessary, “Tomorrow is Saturday, not Sunday because today is Friday, not Saturday.”

For a lot of us who have both OCD and Tourette’s, it is sometimes easy to mistake the two as siblings.

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Our connection with Tim Howard & NJCTS … in print!

Hi everyone! Some of you may have seen this article on CentralJersey.com last week that talked about “a mother’s connection between her children and a soccer legend.” I just wanted to share with you the e-mail my mom sent the reporter that led to the wonderful story. I hope you enjoy it!

PHOTO BY PAM HERSH/Leslie Kowalski proudly shares a copy of the book, "The Keeper: The Unguarded Story of Tim Howard," about the soccer legend’s life with Tourette Syndrome.
PHOTO BY PAM HERSH/Leslie Kowalski proudly shares a copy of the book, “The Keeper: The Unguarded Story of Tim Howard,” about the soccer legend’s life with Tourette Syndrome.

I know you saw me in the emotional place of just having seen my children beautifully described in a national book, but bringing it home and quietly having the time to read Tim Howard’s book has been a very rewarding experience.  Of course it’s a story of his life in the world soccer stage, but I know that very close to his heart is Tourette/OCD advocacy.

He describes extremely well what it feels like to have tics, sensory issues and compulsions — something that so few people understand.  He also describes his own evolution as a TS advocate and wanting to keep that cause central to his work and how that advocacy grounds him.

It started with contacting the amazing and wonderful Faith Rice (the director of the NJCTS) many years ago, and continued with winning a $50,000 Pepsico grant to support programs for kids with TS (which has ultimately led to the development of the unique and extraordinary Tim Howard Academy – http://www.mycentraljersey.com/story/news/local/outreach/caring-communities/2014/07/17/us-goalie-tim-howard-gives-face-tourette-syndrome/12795993/  and  http://news.rutgers.edu/feature/world-cup-superstar-tim-howard-inspires-tourette-syndrome-program-making-debut-rutgers/20140720#.VI7ITNxb474), and also joining the NJCTS board of directors so that he can help very directly.

It’s been 3 years since our trip to the UK to meet Tim Howard.  Today, Tess is 15, and is homeschooled; Paige is 11 and attending public school and is thriving.  In many ways our trip to meet Tim Howard (and his mom, who is lovely, too) still looms large in our lives.

Meeting them set off a confidence in both of my girls (in all of us really) that has carried through to this day. My husband Tim has become a board member for NJCTS and our family as a whole is very involved with the organization.  We attend family weekends at Camp Bernie every year, and the walks in Mendham and Princeton (see more about that below!).

We have also benefitted from the unique family program at the Rutgers graduate psychology program (GSAPP) which is very closely linked with NJCTS, as well as from smaller meet-ups with friends that we have made, support groups, and much much more.  We have witnessed many other families receive support as well, and many other children in the state becoming advocates in their communities.

The scarf that you heard about was a joy to make for Tim Howard.  I love to knit and after meeting him we came upon a quaint British yarn shop, with lovely soft wool.  I knew in that moment what I could do to thank him for our visit.  Something unique that carried the warmth and admiration that we felt for him.

The idea for the raffle that we had won came from Tim and Faith, and it could not have more evident how important being a TS advocate/role model is to Tim (Tim Howard, not my Tim!).   He was warm and engaging, easy to talk to, full of respect for anyone he deals with, and was particularly friendly/encouraging with Tess and Paige.  It was also sweet to watch his relationship with his mom — warm, funny and very very connected.

He is a grounded thoughtful person with a great mom to thank for it!  We enjoyed spending more time with Tim and his mom the next day (we sat with her at the game and then met Tim (and some other players) after the game) and even though he is a very busy man, he treated us as if he had all the time in the world.

To read in his book about that visit was incredible because it only reinforced for us just how important those two days were in our lives.  It’s a treasured memory coming to life in a new way!

After the trip events:

  • As a family we have done much advocacy work together — meeting with Rush Holt (http://njcts.org/wordpress/njcts-content/uploads/2012/04/Congressman-Holt.pdf), NJ State Senator Sweeney (http://www.mycentraljersey.com/videos/news/local/new-jersey/2014/07/08/12383569/, this was also in the printed paper — I believe the Courier News?), attending a “Trip to the Hill” (see more below), and many other events.
  • For Tess, her advocacy started with what was supposed to be a small talk at our synagogue (it was mentioned in the Trenton Times article that you sent to me, along with a beautiful photo of her giving the talk (that I don’t think is in that link?).  We were all very surprised when it became so much more.  Almost 100 people attended the talk, and Tess’s natural (and before that unknown) public speaking abilities were undeniable!  The talk was meant to be the start of her Bat Mitzvah community service project — to raise awareness about TS in our community and end with the planning of a fundraiser walk in the Princeton area (see below).
  • But that talk was such a wonderful event, and from that she was asked to give a talk to a wonderful child education class in South Brunswick High School (http://mnsb.gmnews.com/news/2012-03-15/Front_Page/A_glimpse_at_life_with_Tourette_syndrome.html), and then at a larger event called “Celebrating Diversity” in the South Brunswick middle schools (no article that I know of but I can tell you more), and then at a boy’s school in Scotch Plains (http://njcts.org/wordpress/njcts-content/uploads/2012/04/Awareness-Week-Monday.pdf).
  • The Scotch Plains talk was particularly interesting because the boy for whom she spoke gathered his confidence from that day and went on to become an advocate/fundraiser for the NJCTS (here is just one article, but there are many – http://patch.com/new-jersey/scotchplains/congregation-beth-israel-will-host-debut-of-joshs-popup-restaurant-to-benefit-tourette-syndrome). It was the first event that demonstrated for Tess that she could inspire others the way Tim Howard had inspired her.
  • Since those beginnings, Tess became an official youth ambassador through both the NJCTS and the National TSA (http://njcts.org/wordpress/njcts-content/uploads/2013/06/Tess-Kowalski.pdf and https://twitter.com/NJCTS/status/316188204602642432).  For the National TSA event, we all traveled to Washington DC where Tess trained as a Youth Advocate for 2 days with kids from all over the county.  Then, as a family we participated in the annual TSA “Trip to the Hill”.  We attended a luncheon at the Capitol after which Tess and another wonderful youth advocate from NJ met with the staffs of Senator Lautenberg, Senator Menendez and Congressman Holt.  (At the same time the other youth advocates were meeting with their individual lawmakers).
  • Over the past few years — Tess has gone on to speak in front of many school and scouting groups, totaling around 700-800 students in NJ.  But most notably (for us!) in her sister’s classrooms (3 times now — for her 4th and 5th grade classes, as well as to her current 6th grade team).  Here is one article - http://www.pr.com/press-release/464081

I know that what I have written here has been mostly about Tess, but Paige — who is also a smart, energetic and confident person — was also inspired by our meeting with Tim Howard.  She immediately began to play soccer with the WWPSA (which she continues to this day and loves), and plans to do advocacy work as well.

She did not hesitate for even a second to ask her sister to speak to her classes, and her direct involvement in advocacy has started in the form of very eloquently helping with the Q&As at the end of the talks that Tess has given in her classrooms.  Paige is also taking a creative Communication Arts class at Grover Middle School to learn the finer points of public speaking.  I can see her developing her skills and confidence toward bringing a greater level of understanding about TS/OCD to the world as well.

Bear with me a little longer!

Another piece of TS work that Tess has been doing:  she has also trained to deliver PCME (Patient Centered Medical Education) talks. She has spoken at many hospitals, most notably to over 100 doctors at Yale Medical School (http://patch.com/new-jersey/princeton/plainsboro-girls-tourette-testimony-wows-doctors-at-yale-university), but also at Jersey Shore Medical, Freehold, Robert Wood Johnson, and a few others.  She and Tim (my Tim!) recently attended (and spoke at, along with several other families) a full day symposium on Tourette and OCD at Rutgers University.

Most recently, the walk that Tess dreamed of became a reality last spring — it was a beautiful and successful event.  Tess and Tim chaired the 5K fundraiser, held at Mercer County Park last April and raising over $12,000 toward a scholarship fund for graduating seniors with TS.

The walk was a great success.  Tess and Paige cut the ribbon to start the walk and sang the national anthem at the event — it was wonderful to watch and I cried with joy for much of the event.  We were surrounded by love and support from our family, friends and TS community.

I have a gorgeous photo of NJ assemblyman Daniel Benson reverently holding his hand over his heart while watching the girls sing the National Anthem, and there was a photo spread in the Trenton Times, which for some reason I cannot find online (but I have a printed copy I could show you).  Here are a few links pertaining to that walk that I could find:

We plan to make the walk an annual event and already have a date for spring 2015! It’s March 29, and it’ll again be at Mercer County Park. Here are the links for it so far:

Positive distractions

This past weekend was quite difficult. My head jerking tic came back with a vengeance. It has been painful and exhausting. After a day or two, I realized I had a giant lump on the base of the back of my neck. The next day I began one of my hitting tics, which is hitting my shoulder repeatedly. So, as you can imagine, it was not long before I had a bit of a bruise on my right shoulder. Today, I am not ticking nearly as much, but I am still a bit sore.

It was not just physically that I have felt exhausted, but mentally as well. The only other time I could think of when my tics actually hurt was when they first became a huge problem and I was finally diagnosed with Tourette’s. So, those thoughts and the anxiety that it was going to continue getting worse before it would get any better added to the natural effects of sitting around and doing nothing all weekend…well, you can probably imagine how epically BLAH I felt. 

I will admit that by Sunday evening, when I had started my hitting tic, I was beginning to feel downright horrible and slightly depressed. As I sat at home by myself Monday, I started searching within myself for ways to make myself feel better. I quickly discovered that all the old negative coping skills I used to apply in this situation were all that I could think of. I wondered…where have all the positive distractions I had adopted in time?

This morning, as I was browsing the YouTube universe, I came across a video by Emma Blackery about being angry and things to do when you are angry that will help you feel better and calm down. As I was watching this video, I began thinking of the positive distractions and coping skills that I have learned over the years. So, I thought I would share some of the things I love to do that really help calm me down when I’m anxious or upset or angry or help distract me when I am feeling depressed.

NUMBER 1!!!
Music. Everyone loves music. You can’t tell me that you genuinely do not like music of some kind. Not everyone likes the same genre of music or the same artists, but I am pretty positive that we all like some form of music or another. If not, let me know because I have never met anyone who doesn’t.

Anyway…yeah…Music is a great escape. When you can find a song that expresses exactly how you are feeling in that moment, it is as if someone finally understands what you are going through and what you are feeling. And when you find out that someone else likes the same artists or songs, you instantly have something in common with that person that you can talk about. Music brings people together in ways you can’t even imagine. Music can brighten your day and bring a whole new perspective and attitude into your day. Happy music makes people happy!

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