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:

Teens4TS Showcase: Teaching others how to advocate for themselves

Tess Kowalski, right, and Grace Hawruk are National Tourette Syndrome Youth Ambassadors.

Since joining the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) as a Youth Advocate more than 18 months ago, 13-year-old Tess Kowalski has been busy traveling all over the Garden State – and even outside of it, as her home-school schedule allows – to spread the message that kids with TS are no different than anyone else; they just happen to face different, often difficult challenges.

One of Kowalski’s most recent appearances was May 23 at the Dare To Dream Student Leadership Conference at Middlesex County College. Kowalski teamed with Montclair State University student Katie Delaney, NJCTS Youth Advocates Dylan Teator and Tommy Licato, NJCTS Education Outreach Coordinator Melissa Fowler and NJCTS Medical Outreach Coordinator Jamye Shelton Pelosi to educate attendees about the importance of considering how their experiences and stories with a disability might be used to help them advocate for others and themselves in a positive way.

Kowalski told the scores of attendees that their stories can be used to empower others and as a tool for change and a way to generate greater understanding.

“Something that is so special about the Dare to Dream Conference is that every kid, teen and adult can really connect with every speaker because we’re all going through something hard – something that we struggle with – which sets us apart from ‘normal’ kids,” she said. “But then again, no person is truly normal. So when we all are there together, everyone feels comfortable and relaxed, and they can just sit back, cheer on the speakers and truly relate to them.”

Back in March, Kowalski sojourned with her father, Tim, to Washington, D.C., for the annual National Tourette Syndrome Youth Ambassador Conference. The three-day event presents Youth Advocates such as Kowalski and fellow New Jersey Youth Ambassador Grace Hawruk with training on how to better speak publicly about TS and advocate not just for themselves, but for all individuals living with Tourette.

Tim Kowalski believes his daughter was well-prepared to speak to the Dare To Dream Conference attendees following her training March 19-21 in Washington.

“Taking part in this year’s Youth Ambassador training with Tess, and meeting families affected by TS who came from all over the country, was inspiring,” Tim Kowalski said. “I was certainly the ‘proud father’ as I watched my 13-year-old daughter explain the importance of funding for TS education, research and advocacy to congressional staff members. She and Grace did a terrific job relating what it’s like to live with TS and why we need to do more to help others dealing with this disorder, often without support and surrounded by people who simply don’t understand Tourette.”

During the trip to Washington, the Kowalskis met with representatives from the offices of Congressman Rush Holt (D-NJ12), Senator Robert Menendez (D-NJ) and the late Senator Frank Lautenberg (D-NJ). Their visit to Senator Menendez’s office on March 20 was especially timely, as that very morning the Senator had just reintroduced the Collaborative Academic Research Efforts for Tourette Syndrome Act of 2013 to the Senate.

“The Youth Ambassador training was very helpful and meaningful to me,” said Tess Kowalski, who also spoke to children and families affected by TS at NJCTS’ 9th annual Family Retreat Weekend on June 7-9 at YMCA Camp Bernie. “I got many great ideas for improving my presentations, and I met some really wonderful people. I was thrilled to be a part of this program. This experience is something I will never forget.”

Summer’s here, and I’ve got a lot of awesome stuff going on!

Hi everyone, it’s been a crazy exciting few weeks. I GRADUATED high school! It was bittersweet, as I will miss the safe cocoon that high school gives to us, but I am ready to get out there and experience new things in life.

I was asked to perform my song ‘I Can Do Anything” at graduation, and it was a great experience. We had about 4,000 people in attendance, and the crowd had a good time. Check out the video here.

I am all set for fall college, and I’ll be majoring in Theater Arts. I am also officially in the studio recording my new single, and I’m in a show called “Guys and Dolls” this summer — all while enjoying time with my friends.

Then, on July 20, I’ll be singing the National Anthem at the Somerset Patriots game! I’ll be doing the same thing on August 16 at a Camden Riversharks game. Come on out and hang out with me at both events!

I also want to thank Josh Klapper and his mom Susan for having me out at the Terrill Middle School for the walk they put together to raise money for the New Jersey Center for Tourette Syndrome. It was a great time. I’m sorry I missed the NJCTS Family Retreat Weekend at Camp Bernie, too, but sometimes my super human powers fail me and I get sick.

Have a great summer, and I’ll be back soon!

The future is bright

Hi everyone, I can’t believe how quickly summer is approaching. What’s new in my world? Well…I can’t wait to see everyone at the weekend retreat. I’m looking forward to meeting everyone and singing for you and WITH you this weekend.

My senior year of high school is almost over. I am nervous and excited for the future and also sad to say goodbye to my friends. The future is bright.

I have been so busy. I had my senior prom. That was A M A Z I N G. Last year, I was afraid to ask a girl to prom, I thought that no one would want to go to prom with the “Autistic Kid”. This year, I found my confidence and realized that the only person holding me back was me. I went and had a great time with my date Joanna and our friends.

I have been singing a lot! My favorite gig recently was singing at the Memorial Day services. I love singing the National Anthem, but to be surrounded by Veterans and on such a somber day — well, it is an honor. Here is the video.

Last week, I was blessed with pinkeye. They say real men wear pink…I sure did.

Tomorrow, I’m going to Terrill Road Middle School to help my friend Josh and his teachers put together a walk for Tourette Syndrome. I am looking forward to supporting his efforts and meeting his friend, teachers and classmates.

I have been following everyone on the blogs, it’s great to see so many teens getting involved and making a difference. The more we use our voices the more we will be heard.

Follow me on twitter @corysings and check out my event page. I am looking forward to posting pictures on my website soon, especially of my NJCTS teen friends.

I hope you all had a great weekend, and see you this weekend!

I WON!!!!

doanything-300x195I won!

Can you believe it?  A kid who tics, has Asperger’s and other disorders, won a National singing competition on the Kandi Factory!!!!

I was so proud and very proud to represent our community.  It was a hard secret to keep, as I knew I had won the competition in December. One of the best experiences of my life!  It was so great to work with Kandi and her team, and I love my song.  It was an honor in itself to have Kandi write me a song and even more humbling when I heard the lyrics for the first time.

Here is my video, tell me what you all think.  I can’t wait to see the campers at NJCTS’ annual Family Retreat Weekend at YMCA Camp Bernie on June 8!  I’m looking forward to visiting and singing for all of you!

If anyone has a song request, respond to the blog!

NOTE: NJCTS will have much more on Cory and his story of winning the Kandi Factory competition next week, and it’ll be all right here on the blog. Stay tuned!