Camp is over, but it’s never REALLY over

Camp is one heck of an amazing place! I miss it so much already! I’m still speaking about camp in the present tense when I tell people camp stories right now. I refuse to speak about it like it is over. I am in denial that we are back in the real world. I cried quite a bit again now that I am home and realizing that camp is really over.

My awesome co-counselor, Becca, helped me calm down, though, and I have stopped crying for now, but know I will cry at least one more time in the next few days or maybe many more times. I just want to go back to camp or want all my camp friends to come live with me in St. Louis. Love you all, and of course I miss my amazing campers, too.

I just have to try to keep in mind what one of my campers said, that camp lasts all year because your memories of camp and the support from the people at camp who now care about you so much and will be there for you when you need them is always with you no matter where you are physically.

These girls are all so mature for their age. Many of them have to be to get though all they have gone through. Most of the time, the amazing words that come out of their mouths both surprise me deeply and touch me. This is what will get me though the year until camp again next summer. Hope this post makes some since even though I am super tired and teary-eyed right now . Just had to say this.

Camp Twitch and Shout changed my life

I’m back from Camp Twitch and Shout! It was one of the best experiences of my life, and I am in no way exaggerating. I feel like I changed and grew so much in just one week. I didn’t know how much I was capable of doing for these girls. I love them and they taught me just about much, if not more, as I taught them. Maybe you’ll come next year.

There’s not much responsibility being a counselor for the oldest age group, 15-16. They take care of themselves, and you just have fun! I know I made a difference in their lives, and I know they made a difference in mine. It was the most rewarding experience I have ever had. It surpassed all of my expectations.

I want to be back at camp so much right now. More blog entries/pictures to come when I get settled down a bit more. Right now things are pretty crazy.

DBS for TS

Hey all! Not sure if I’ve mentioned here, but last Tuesday (July 16) I got DBS (Deep Brain Stimulation) for my Tourette’s.  As some may know, my Tourette’s was very severe and debilitating. DBS was my last option, as I’ve tried it all.  I went for the surgery up at New York University!  Dr. Mogilner performed the surgery.

So far, I’m doing great!  The probes being in my brain has (as Dr. Mogilner described) damaged that part and temporarily stimulated it, in turn causing my tics to dwindle to a mild state the past week!  Now that my brain is healing, my tics are coming back.  He said that would happen, and it’s a great sign that it calmed my tics to begin with.

I get my batteries turned on to stimulate my brain Friday, July 26.  I am beyond excited!  My future is looking very positive now. 🙂

Against Bullying and Suicide

1002111_222158214575267_1012190192_nHi everyone! I have a favor to ask of you. One of my friends started a page called Against Bullying and Suicide on Facebook and is needing more people to like her page. If you could please go over there and like her page, it would mean both a lot to her and to me. Also, you can share your stories on their and reach out to other people. Thank you all so much! 🙂

I’m getting my own Tourette lab research project!

On Thursday I had a meeting with my mentors in the Tourette’s Syndrome Neuroimaging research lab that I work in as a student. They are giving me my own research project, or as they call it my “baby.” I am pretty much going to run it on my own and then go to my mentors when I have questions or need any help, but this is basically going to be my project.

I am honored that they trust me enough and think I am capable enough to handle this big responsibility! I am also of course a bit nervous as well, but I know I can do this! It’s a study about Tourette’s Syndrome and the co-occurring hypersensitivity to stimuli, otherwise known as sensory processing disorder.

I’m not going to say much more about it other than that because of privacy issues of the lab, but I can tell you that it’s a pretty neat experiment, and I’m excited to start working on it!

Also, while I was in the meeting I told my mentors that I was going to be out of the lab to go to Camp Twitch and Shout to be a counselor. They were so excited about this! They told me that they thought it was great that I was going to be a counselor and one of my mentors said, “The kids there will love you! They’re all going to want to be just like you when they grow up!”

It was so nice of him to say this to me, and it made me feel really good. I’m so glad to have such wonderful and supportive mentors who, of course, know all about Tourette’s because that’s what they specialize in studying. 🙂

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.”

Camp Twitch and Shout is almost here!

Just 1 week and 2 days until I am off to Atlanta, Georgia, to be a counselor for the first time at Camp Twitch and Shout! I am beyond excited! For those of you who are going to be at camp this year, I will see you there and I can’t wait to meet you!!! I have been waiting for this ALL YEAR; well, really more like for quite a few years, and I can’t believe I will be their in 1 week and 2 days. It is really so surreal to me.

If anyone else on here is curious about Camp Twitch and Shout, it is a one-week summer camp for children ages 7-16 diagnosed with Tourette Syndrome held in Atlanta! Also, you can be a counselor starting at 19! Registration is closed for this summer, but for those of you who are interested you can check it out for the future.

So, anyway, I’ve been counting down since may really but now the real countdown has begun!!! I’ve planned all my outfits for the theme days, I’ve started to gather the things I need for camp on my list, and I’m still fighting off the urge to pack up right now! I’ll probably start packing next week, but it’s soooo tempting to pack NOW because I am just that excited!

I also have found out who my co-counselors are going to be, which was super exciting, and we have been messaging each other on Facebook about camp! They seem so awesome, and I can’t wait to meet them in person! We have been introducing ourselves to each other, talking about how excited we are all for camp, and have been planning our cabin theme — which I won’t release yet because it’s supposed to be a surprise, I think!.

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.”

Need to get off my medication before the big surgery

Hey everyone! I have a prayer request!! I have to go off all of my medicine before having Deep Brain Stimulation surgery. As some of you know, the reason I can even feed myself and bathe myself is due to a medication called NAC (N-Acetyl Cysteine). We’ve lowered the dose, as I need off it today!! I’m really nervous that I’m not going to be able to function at ALL. The pain is unbearable even with NAC, so I can’t imagine being off it again!! Any prayers would be appreciated!! Thank you all!!

I also want to say I’ve felt an overwhelming calmness of my body lately. While I obviously still tic, I’m not hurting as bad. I actually went mini-golfing with my brother and his friends the other day. I did well, too — no huge cursing tics or falling on the ground. I was able to walk around! Was a bit drained and fatigued when I got home, but I truly feel God working through me. I know he’s with me!!! Oh, and PS — I won in mini-golf! Haha

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!