Guest Blogger: Tourette Syndrome + OCD was exhausting & difficult

It was more than 23 years ago that I was diagnosed with Tourette Syndrome.

I’ve learned a lot in that time. About myself, about others and most of all, that our relationship with mental health and conditions like TS is far more challenging than it should be.

My parents had a lot on their plate, jobs, managing a household, raising 3 children (one with considerable special needs), when I started developing some unfamiliar behaviours. A reoccurring urge to violently shake my head was one that began to frighten them. I once became so distracted with this urge that I stopped my bicycle in the middle of the road to indulge, without paying attention to the flow of cars around me. Sometime after that we began seeing doctors and specialists and figuring out what was going on.

Tourette Syndrome is a neurological condition that essentially causes repeated involuntary movements and sounds that are referred to as “tics”. It affects everyone differently, and contrary to what you may have seen in movies, most persons affected by it do not swear uncontrollably.

Tourette Syndrome was something seemingly unknown to most people and there was lots of learning for all of us to do. What was most challenging for me wasn’t necessarily my life at home or these urges (“tics”). It wasn’t that I had to live with them that caused me the most trouble, it was that I was expected to live a normal life in a world that wasn’t always going to just let it happen.

From experience, I quickly knew that each time I gave in to my tics, someone was going to notice. I knew that each time someone noticed, they were going to make choices. Were they going to pretend nothing happened? Were they going to exploit the opportunity to make a spectacle of it and lead others in a chorus of teasing and diminishment of my character? Or were they going to simply get “weirded out” and lose trust in even being near me?

Naturally, thinking about all of these things stressed me out and just fuelled more of a need to indulge my tics. Trying to hide and suppress them took a lot of energy. During the worst of it, there were probably days where I spent most of my time managing these expectations and very little on school work, engaging with friends or anything else until I finally had a moment of privacy. I was usually too exhausted to do a whole lot with those moments.

As I’ve written before, there were other things also happening to make my childhood difficult in ways that probably interacted with or exasperated this condition.

Continue reading

Our connection with Tim Howard & NJCTS … in print!

Hi everyone! Some of you may have seen this article on 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 —  and, 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.

Continue reading

Tim Howard’s book “The Keeper” is now available!

Here’s are two excerpts from Tim Howard’s new book, “The Keeper,” which came out yesterday, December 9. The first is from the chapter called “Like Coming Home” and talks about arriving at Everton Football Club:

“At the start of the ’06-’07 season, I step out onto the field at Goodison Park, where Everton plays. It’s the derby with Liverpool, the hometown rivals. I love the feel of the place — the rickety old stadium, as historic and un-corporate as they come. I love the fans, their pure, passionate, and deafeningly loud dedication to the team. I love the fact that the team has taken a chance on me, that they’ve pulled me out of a dark place. Standing there on the field, about to play Liverpool, all I want to do is play my heart out. I’ve come home.”

This one is from an early chapter called “Goals That Matter”, when Howard first learned that he had Tourette Syndrome & OCD:

“I struggle in school — I’m hyperactive, and I have trouble sitting in my seat. My mother, aware of my desperate need to move, to run, signs me up for soccer by age 6. I fall in love with the game. I love the fluid back-and-forth, the challenge of playing a game using only one’s feet. By age 11, I begin to show strange behaviors; I touch things compulsively. I become obsessed with picking up random items for no logical reason. Then I develop tics — twitches and jerks that I can’t control no matter how hard I try. Mom and I learn that I have Tourette Syndrome (TS) and Obsessive Compulsive Disorder (OCD). The doctor tells my mom that often, these conditions have a “flip side,” and he’s seen cases where kids have special gifts. It is only on the sports fields that I feel relief, so I focus on my athletic skills exclusively….obsessively.”

You can read much more about Tim Howard, who is a Board Member of the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) here:

New Jersey sub shop to host Tourette Syndrome fundraiser on November 5!

Youth Advocate Tommy Licato has done a lot of awareness work on behalf of the Tourette Syndrome community for years now — and he’s still in high school. Tommy’s incredible efforts on behalf of the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) once again have yielded an opportunity for people to show their support for TS.

This time, Tommy has teamed up with Mr. Subs of South Plainfield to host a benefit fundraiser on Wednesday, November 5. From 4-8 p.m. that day, 15 percent of all proceeds at Mr. Subs will go toward the 5th annual NJ Walks for TS at Mendham, which supports the NJCTS School In-Service Program.

The School In-Service program educates students and teachers at schools in every corner of New Jersey about Tourette Syndrome, anti-bullying and self-advocacy. Tommy has been attending the walk for years and hopes that you will, too! But if you can’t, this fundraiser is a great way to take part. Or you can donate to the cause.

Mr. Subs is at 100 South Plainfield Avenue in South Plainfield. Hope to see you there on November 5!

My latest song: “The Ghost”

Welcome summer & goodbye high school!

It’s been more than six months since I last reached out with my song and video “Wallpaper.” It got more than 30,000 views and some great coverage. I wrote a couple of new songs and even posted a cover (people keep telling me to do that).

I didn’t do videos because I’ve been so busy wrapping up Grade 12, and I also have 2 part-time jobs now. I’m starting Algonquin in September in the School of Media and Design—excited about this!

I’d appreciate it if you’d listen to at least “The Ghost” if you can spare about 3 minutes. 🙂 Drop me a note in the comments section, too, if you’d like. I always love hearing feedback.



The candle burns at both ends,

You say we’re nothing but friends,

I understand,

Standing at the foot of my bed

The ghost is shaking his head

I’m spilling red

Four Months

Cover – You’ve Got a Friend

PRESS – “Wallpaper”

1. Skope Magazine:

2. Feminindie:




I’m featured in the Trenton Times and on!

Check out my story that appeared yesterday in the Trenton Times and on! It’s about the New Jersey Center for Tourette Syndrome & Associated Disorders’ (NJCTS) Children’s Scholarship Program and the NJ Walks for TS at Princeton event this Sunday that is taking place to help support the scholarship program.

I was an NJCTS scholarship winner last year, and this year’s winners should be named in the next couple of months. This is very exciting! One of my favorite parts of the story is when they used this quote from me:

“My parents have taught me to be outspoken about Tourette syndrome and to never be ashamed.”

It’s so true! I hope you like the story. Let me know what you think by leaving a comment here. I’d appreciate it!

NJ Walks for TS at Princeton is right around the corner!

A few months ago, I talked about the NJ Walks for TS at Mercer County Park (near Princeton township) which will take place on Sunday, April 6. Registration will begin at 1 p.m. and the walk will start at 2 p.m. I’m urging you to please come join me there and help support NJCTS.

The money raised will be applied to the Children’s Scholarship Fund, a program that has helped more than 200 high school seniors with TS. Our goal for this fundraising walk is $10,000, and if we want to be able to achieve this, we will need the support of everyone in the central and southern New Jersey TS community.

This walk can make a big difference! It means so much to me, and it is a wonderful and fun way for us to help NJCTS — which is an important organization to all of us! If you can’t attend the walk, please consider making a donation.

Thank you! Hope to see you there!

Fantastic Friends: A great social opportunity for NJ teens with special needs

Hello! My name is Marissa Hacker and I am the National Child Awareness Month (NCAM) New Jersey Youth Ambassador and also the founder of a nonprofit organization called Fantastic Friends.

This year for my Ambassadorship project, I am on a mission to travel to different inclusive social programs in New Jersey and help spread awareness about the need for these programs. I started a campaign called NJF.R.I.E.N.D. (New Jersey Facilitating Resource Improvement Empowering New Development), to help connect people with disabilities and special needs to these inclusive social programs.

Fantastic Friends is an inclusive social group for tweens, teens, and young adults with special needs. Every month Fantastic Friends holds a themed social function in a South Jersey location.

I have some members in my organization that have Tourette Syndrome, and I would like to connect with more people who have Tourette Syndrome. I would also like to help spread more awareness for Tourette Syndrome, while also blogging about Fantastic Friends events that are always open to new friends and volunteer friends.

Being a sibling of a brother who has Autism, I know the struggles that come along with having a disability. I see that the biggest problem that people with disabilities face is social isolation. I am looking forward to your feedback! Thank you very much!

Rock group “The Lappes” to jam at NJ Walks for TS at Mendham on November 23

The Lappes (pronounced laps) will partner with with the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) for the second time this year by playing at the 4th annual NJ Walks for TS at Mendham, on Saturday, November 23, at Borough Park.

The Lappes, who played in April at NJ Walks for TS at Ramapo College, are looking forward to the upcoming event and will begin playing when registration and check-in opens at 9 a.m. The walk itself will commence at 10 a.m.

The Lappes are a four-piece, smooth rock fusion band that have taken their inspiration from classic rock and reggae icons such as The Allman Brothers Band and Toots and the Maytals, and fused it with contemporary sounds comparable to John Mayer and Phish. Band members include guitarist and vocalist Tom Wilkinson; guitarist, pianist and vocalist Will Miehe; bassist John Fraze and percussionist Shane Naidoo. 

Tourette Syndrome (TS) is an inherited, misdiagnosed, misunderstood neurological disorder characterized by involuntary movements and sounds called tics that affects 1 in 100 children and adults. Miehe – who was diagnosed with TS, Obsessive Compulsive Disorder (OCD) and Attention Deficit Disorder (ADD) in the third grade – is excited to once again support New Jersey’s vast TS community.

“We had a great time playing at the last walk,” Miehe said. “TS is something that has affected me personally. Music has helped me cope with it, and I would like to share my outlet with others. We hope for a good turnout and anticipate an amazing time.”

The Lappes have performed in numerous iconic New Jersey locations, including The Court Tavern in New Brunswick and The Revel Casino in Atlantic City. Currently, The Lappes are cutting a demo EP that will be ready for release by the end of November 2013. For more information or to look up show dates, please visit The Lappes’ Facebook page You can also follow them on Twitter or Sound Cloud. 

NJ Walks for TS at Mendham will be a day of advocacy, awareness, acceptance and action geared toward raising funds to support educating students and teachers about TS across the Garden State through the School In-Service Program. All money raised will help fund the School In-Service Program, which costs NJCTS $71,000 per year.

More information about NJ Walks for TS is available by calling 908-575-7350 or by visiting the official registration and fundraising pages.