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:

Youth Ambassador applications are now available for 2015!

TSA seeks at least one teen and parent/guardian team from each TSA chapter (or at least one team per state not served by a TSA chapter) to attend the upcoming YA Training. The Training for teens and their parent/adult guardian will take place March 10-12, 2015 at the Crystal Gateway Marriott in Arlington, VA.

The TSA Youth Ambassador Training is a two-day comprehensive training program aimed at creating exceptional teen leaders and TS advocates. Youth Ambassadors will receive guidance on speaking in public, on how to give a concise presentation on TS and presentation logistics. The Training also includes participation in TSA’s annual National Advocacy Day.

This is an excellent opportunity for interested teens to learn public speaking, build friendships with other teens involved in the program, gain leadership and advocacy skills, and represent the Tourette Syndrome community as they raise awareness through YA Program activities. Click here to download the application.

Your completed application should be submitted to your local Chapter. Applicants residing outside a chapter area can email or mail completed applications to TSA c/o Michelle Gutmann. All applications must be submitted no later than Friday, November 21, 2014.

Being rejected by someone else with Tourette

I haven’t written about this on my blog yet, because truthfully I was unable to. It was a year ago that it happened, but I haven’t felt secure enough to write about it until now. It’s been a full year though and I feel like I have enough distance from it now and strength to not let it hurt me anymore.

A year ago, I was a sophmore in college who had come back to school after my first summer as a counselor at Camp Twitch and Shout. I felt empowered because I had made a difference in children’s lives who had gone though what I had, and I felt accepted and loved after being welcomed into the camp twitch and shout family. Coming back to school I was more confident, but still fragile. Other people still greatly affected how I felt about myself.

I joined a new student group on campus and opened up to them about how I was involved in the Missouri Tourette’s Syndrome Association. I didn’t tell them that I had Tourette’s, but I ticced enough that it was probably obvious. After one of the meetings, another girl in the club who was a year older than me came up to me and told me that she was a Tourette’s Syndrome Youth Ambassador and when I asked how she got involved, she told me that she had Tourette’s. I was so excited!

I told her I have TS, too, and that I wished I could have been a youth ambassador but I was too old when I found out about the program. Even though I recognized her as one of the people who interviewed during sorority recruitment for a sorority that I was rejected from and even though the people during recruitment from that particular sorority were not very kind to me, I was still excited.

She was the first (and still the only) person on campus I had met who also had TS. I saw the potential of having a friend on campus who truly understood what I was going through, who was older, and who I could look up to. I saw the potential of having someone on campus that I could have a strong relationship similar to the relationships I had made at camp. Of course I had amazing friends at school already, but the potential of having a friend on campus who also knew what it was really like to have TS was something that I felt could be really special.

I started telling her about myself and about camp and after about a minute she became very standoffish and distant. I was being nothing but kind and warm to her after she had opened up to me, and I was confused. After only a minute or two of me opening up to her, she suddenly said she had to go and walked away. Had I said something wrong?

Now that I had opened my mouth, did she think for some reason that I was just a really lame person who she didn’t want to be friends with? No, I thought. I tried to reassure myself that she must have really needed to go. She probably needed to study or meet up with someone. I tried to convince myself it had nothing to do with me, but after being rejected by so many people in my past because I was different, it was hard for me to truly convince myself of this. Deep down I thought it was something I had said, something that gave me away to be a nerd or someone who was not as “cool” as she is.

Later on, I decided to send her a message.

Continue reading

Advice & learning from the Tim Howard NJCTS Leadership Academy

Hi there, my name is Adam and I have Tourette Syndrome. I am a National Tourette Syndrome Youth Ambassador. I know this is a little late, but I want to talk about my experience at the Tim Howard NJCTS Leadership Academy, which took place August 1-3 at Rutgers University. My favorite part of the academy was the amazing feeling I had knowing that the people there knew what I was going through. It’s called empathy. They could feel what I was feeling and I could feel for them, too.

I learned a lot about TS when I was there. I learned about what goes on in the brain when someone tics. I learned about experiences that the coaches have had throughout their life and got to ask them questions about how to handle my experiences. I learned how to organize myself effectively and efficiently during the executive function workshop. I learned about the social aspects of TS, like the benefits of being honest and open when dealing with friends and other relationships.

Lastly, I want to give some advice to the readers of this post. My advice to you, the reader, is to find that thing that you’re so so passionate about. Whether it be soccer or baseball, singing or theater, cooking or politics, doing that thing that you’re passionate about will make you so happy, so proud and confident in yourself, that you never want it to end. Mine is Tourette Syndrome advocacy.

Thank you for reading this, and I hope you find your passion.

Finally focused!

For my first blog I wanted to share a little bit about when I was first diagnosed. I’ve always been a little twitchy, I started blinking my eyes and sniffing when I was in preschool and developed many more simple motor tics. Since I was young, nobody paid any attention to it. As I got older however, my tics became complex and starting causing problems with my grades.

At this point, I was in fifth grade and my little brother had already been diagnosed. I knew I had Tourette Syndrome, too, so I sat down with my mom and told her about it. A few minutes later she was on the phone with my neurologist scheduling an appointment!

When I reached sixth grade my tics were awful. I couldn’t focus, I was always holding my tics back, and they were hurting me. So I did research and decided to educate my class on my disorder. My class handled the information so well and treated me the same as everyone else! It was such a relief for me.

But through my research, I found out about the Youth Ambassador program and we found NJCTS. Now, my I’m doing fantastic and I’m so thankful for all of the people who helped me along the way!