2014 NJCTS Children’s Scholarship Award Essay: “Tourette is a Blessing in Disguise”

This is the essay I submitted to the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2014 Children’s Scholarship Award contest. I hope you enjoy it!

My grandmother always told  me that every person  was put  on this  earth for a  purpose. Some people bring music to the world or find new  cures for different  diseases. I,  on the other hand,  was placed  on this  earth to  spread tolerance for  those living with Tourette Syndrome.

I could go on about how horrible it is to  have Tourette Syndrome  and how it  has been embarrassing, depressing  and sometimes painful. I could go on  about how it has negatively affected my life. However, I  am past that stage in my life.

Through my work as a Youth Ambassador  and a Patient-Centered Educator, I  have become confident about living life with this disorder  and have become grateful that I  was blessed with the opportunity to make a difference in the Tourette’s community. I will share that Tourette Syndrome has positively  changed my life.

Tourette Syndrome has molded me into the person I  am today. Having this disorder has brought  me to new  and exciting  places to meet amazing and inspirational people. I want to show people the positives over the negatives of living life with Tourette Syndrome.

Having Tourette Syndrome is like living your life  on repeat. Same tics every day, the same sideways looks from others, and the same  need to explain myself over  and over again. Every day I  share my story in order to  educate the world  about the disorder, to clarify that having Tourette Syndrome rarely entails shouting  curse words  and absurd phrases.

I  can truly say that having Tourettes Syndrome is a blessing in disguise. It  has brought me closer to my friends  and family. It  has brought me to make new friendships  and go places I never thought I would go. I  can confidently  say ” Hi my  name is  Grace Hawruk, and I have Tourette Syndrome.”

Making friends can be very hard in college

I just met my first other person at my university who has TS. It makes me feel less alone on campus to know someone personally now who has TS on campus, too. Her tics are more mild than mine, and she told me she doesn’t really talk about it with other people at school really, but still it makes me feel less alone and it was definitively cool to be walking on campus with her for about 5 minutes (until we had to go separate ways) getting to talk about TS and how we have been involved in our state’s TSA’s.

She was in the first group that ever got trained as youth ambassadors which I think is really cool, especially since when I found out about the Youth ambassador program I was too old for it. I told her how I’m a counselor at Camp Twitch and Shout, hoping she would be interested, but she said that if she ever went to camp she would come home crazy.

Which is true — I did come home crazy with my tics really bad, but it only lasted a few days until they went back down to their normal level. Anyway, I thought it was just neat to meet her and talk with her for those 5 minutes.

I told myself I wasn’t going to message her on Facebook afterward because I know I get upset if I message someone and they never message me back, but then I remembered that I know someone she might know from her hometown TSA and I just couldn’t help myself, I had to message her and see if she knew the person I know otherwise it would have nagged at me and nagged at me until I messaged her. Thanks OCD …

Anyway, I seem to have this hope that she will message me back and that we will become friends because she just seems like a really cool person renegades of the fact that we both have TS, but I think it’s probably more likely that those 5 minutes we talked will be the only 5 minutes we ever talk one-on-one, even though we are both on the disability awareness committee and both have TS.

I guess I feel this way because I have been feeling pretty low lately and don’t want to get my hopes up. I miss my two best friends who of course go to different colleges than I do. I miss the closeness I have with them and feel like although I have a decent amount of friends, I am having trouble finding that closeness in college.

I feel like a lot of my friendships here can be very surface level and like I can’t talk to them about deeper things and have them understand me like my two best friends from home do. I miss closeness and understanding, and the ease of making friends that I had at camp. It’s just not that easy here at college. It’s hard.

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.”

Teens4TS Showcase: Advocating in New Jersey and beyond

Grace Hawruk’s junior year at DePaul Catholic High School wasn’t an ordinary one. In fact, it was chock full of more extracurricular activities than many students her age. That’s because Hawruk, 17, has been busy advocating on behalf of the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS).

On January 25, Hawruk joined Dr. Tolga Taneli for the “Living Tourette with Grace: Patient-Centered Education” grand rounds presentation at New Jersey Medical School in Newark. Hawruk addressed a panel of health-care professionals about the importance of proper diagnosis and treatment of TS.

In March, Hawruk was chosen by NJCTS to attend the prestigious National Tourette Syndrome Youth Ambassador Conference in Washington, D.C. From March 19-21, Hawruk received training on how to speak publicly about TS and advocate not just for herself, but for the entire Tourette community. She also met with several of New Jersey’s federal legislators, including Senators Frank Lautenberg (D) and Robert Menendez (D), and Congressman Rodney Frelinghuysen (R-NJ11).

“I had an unforgettable experience attending the conference,” said Hawruk, of Butler. “I feel so fortunate to have been chosen as a Youth Ambassador representing New Jersey. I received extensive training on the best way to educate other students and adults about Tourette Syndrome, and the need for people to understand and be tolerant of people with TS. I know from personal experience that people can be confused by the symptoms of TS and can have preconceived ideas about TS.”

And in May, Hawruk ventured to the Our Lady of Mount Carmel School in Boonton for presentations to students in 3rd and 4th grade, as well as 5th through 8th grade – after which she noted that the students, teachers and principal were very interested in Tourette Syndrome and learned a lot about the neurological disorder that affects 1 in100 children. She then spoke to another group of health-care professionals in a Patient-Centered Medical Education presentation at Saint Peter’s University Hospital in New Brunswick.

Hawruk chalks up her willingness to shoulder such a heavy slate to two things: Her desire to help aid the mission of NJCTS, which in part is to provide programs and services to the TS community, and the plethora of information she learned during her March trip to Washington.

“My experience (at the Youth Ambassador Conference) was amazing!” she said. “I will forever treasure that experience, and I look forward to my mission as a Youth Ambassador of educating students about TS by making presentations at more schools and organizations.”

2013 NJCTS Children’s Scholarship Award Essay: “TS has Shaped My Life”

This is the essay I submitted to the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2013 Children’s Scholarship Award contest. I hope you enjoy it! And here is my profile on the NJCTS website.

Fleischman, EmilyI was diagnosed with Tourette Syndrome and Obsessive Compulsive Disorder when I was 6 years old. As I got older, I tried to control my “tics” because I was embarrassed and afraid someone would make fun of me. I would try to hold my tics in all day long while at school and couldn’t wait until I got home so I could tick all I wanted.

Similarly, I rarely went on play dates after school because I wanted to go home so I could tic, and I never went on sleepovers because of the same reasons.

I continued to try and hide the “real me” until my freshman year in high school, when my doctor suggested I tell a few close friends about my TS and OCD. She related it to diabetes — a problem that you cannot control. I was hesitant about the idea and not convinced that it was OK, normal, cool or any combination of those words to have Tourette Syndrome — until my mother and I came across the NJCTS website.

Two weeks after the discovery of NJCTS, I told my two best friends about my TS, OCD and tics. They were wonderful and understanding. It became so much easier to relax with them, since I did not have to worry about hiding my tics. I even slept at one of their houses that night!

In April 2010, my life really changed forever for the better. Continue reading