Pioneering the first Tim Howard NJCTS Leadership Academy

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Words cannot express how grateful I am to Tim Howard, Melissa Fowler and everyone at the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for my daughter Hallie being given the opportunity to participate in the Tim Howard NJCTS Leadership Academy on August 1-3 at Rutgers University.

To be included in the first incarnation of this academy was so gratifying, meaningful and life-changing. I view Hallie as a pioneer at times — as she navigates her journey with TS — so it is truly fitting that she was able to join with other pioneers to excavate a path for others who share similar challenges in their lives.

Despite the fact that Hallie has spent very little time away from our family, I had no worries about dropping her off at Rutgers to begin that special weekend. In fact, as I got in the car, I felt an overwhelming sense of comfort, and I welled up with tears of pride that I felt for Hallie — a sense of pride that I don’t think I had ever felt before. I can feel it now again, as I am writing this. I suppose it comes from witnessing my child grow and evolve in ways that many adults have not yet achieved, and may never achieve in this lifetime.

I can still remember the first time I noticed Hallie’s TS symptoms (although friends noticed it even sooner, and in hindsight, I had already seen many associated symptoms). We were at the NJ Renaissance Fair, and she was 6 years old — just about to enter first grade. As Hallie was enjoying observing the Renaissance Fair actors delight in a game of human-sized chess, I was busy observing her intense blinking, and her tongue protruding out of her mouth as she opened her mouth every 20 seconds or so.

I was not the only one to notice. There were others watching her — and to me, it felt like everyone there was watching her. Although this was certainly not the case. In that very moment, I felt like pitying her, and admittedly, myself. How horrible is that? I actually felt bad for myself. I just wanted to take it all away from her, because I sensed in that moment that this was not a phase and may be something she was going to have for a very long time, if not her whole life. I thought that people would be staring at her for the rest of her life and may never see her for who she truly is.

It is now 8 years later, and many, many motor and vocal tics have come and gone, and many other associated symptoms that have been even more debilitating have waxed and waned. I also have another daughter who has experienced much the same as Hallie — yet even much worse in terms of intensity. It has been quite the roller-coaster ride.

Throughout all of these challenges, I have experienced my own growth and evolution. I have moved through the pity and self-pity. I have moved through the guilt and shame — and blame — that came later. I can save that for a future post! :) For now, I will simply express that by seeing Hallie transform her adversity into a blessing, she has blessed me, and shown me how to do the same in my life.

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10 Common Tourette’s Questions & Answers, Part 10

Living with neurological disorders can be full of challenges for both children and adults. The good news is that life with these disorders can still be filled with joy and adventure. It just takes some creative thinking and flexibility to get there, and that’s what I’m here to help with! Visit me on my own site, brittanyfichterwrites.com, if you want to know more!

10 Common Questions and Answers About Tourette Syndrome

Tourette Syndrome, despite all the information we’ve gained in the last 15 years, is still a hard topic to find information on. Unfortunately, the media has chosen to pick out the parts of the disorder that it deems funny, and the rest of the information seems tucked away in textbooks on dusty corners of doctors’ desks.

Well, no more. Here is the 10th and final in a series of 10 questions that touch on topics I’ve talked about with parents of children (and individuals) with Tourettes multiple times. You want a quick, easy answer to share with someone who doesn’t understand? Hopefully, I’ll have it right here as part of this series!

In case you missed them, here are links to all of the other parts:

Part 1
Part 2
Part 3
Part 4
Part 5
Part 6
Part 7
Part 8
Part 9

Also, if you want more information about a certain topic, I’ve linked related posts underneath each answer. My related posts will have more sources that you can look up on the topic if you so desire.

Are There Ways to Lessen Tics?

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Should I have a child?

Hello. First time on this site. How is everybody? I hope we can create a better environment for Tourette Syndrome patients so they have a better life.

I have an issue that I could use some help with: My nephew has Tourette, and I wanted to know the ideas on how much is the chance my child would have this syndrome?

Any help or insight you could provide would be much appreciated. Thank you!

10 Common Tourette’s Questions & Answers, Part 9

Living with neurological disorders can be full of challenges for both children and adults. The good news is that life with these disorders can still be filled with joy and adventure. It just takes some creative thinking and flexibility to get there, and that’s what I’m here to help with! Visit me on my own site, brittanyfichterwrites.com, if you want to know more!

10 Common Questions and Answers About Tourette Syndrome

Tourette Syndrome, despite all the information we’ve gained in the last 15 years, is still a hard topic to find information on. Unfortunately, the media has chosen to pick out the parts of the disorder that it deems funny, and the rest of the information seems tucked away in textbooks on dusty corners of doctors’ desks.

Well, no more. Here is the 9th of 10 questions that touch on topics I’ve talked about with parents of children (and individuals) with Tourettes multiple times. You want a quick, easy answer to share with someone who doesn’t understand? Hopefully, I’ll have it right here as part of this series!

In case you missed them, here are links to the first 8 parts:

Part 1
Part 2
Part 3
Part 4
Part 5
Part 6
Part 7
Part 8

Also, if you want more information about a certain topic, I’ve linked related posts underneath each answer. My related posts will have more sources that you can look up on the topic if you so desire.

Can People with Tourettes have More than One Disorder?

Along with my Tourettes, I have OCD tendencies and generalized anxiety. Sometimes, it’s hard to tell where one disorder stops and the next one starts because they share so many symptoms. Tourettes is often comorbid with other disorders. That means that this disorder is often present with at least one other disorder, or parts of it at least. The Psychiatric Times article, “Tourette Syndrome,” reports that individuals with Tourettes often have ADHD or OCD. (And many people have parts of all of both!)

For more information, see: Comorbidity in Neurological Disorders

TourettesComorbidity

52 Weeks of TS: Week 16

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. In cased you missed the first 15 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

Here we go. I said last week that this week would be an interesting and special entry. I didn’t quit smoking once again, but I’m conquering some fears — or at least trying. I’m on a four-hour bus ride to Boston from New York for work. I have practically bathed in Purel and Lysol, and have taken extra Klonopin.

A gentleman sat down next to me and within about five minutes, I warned him I have TS, and besides the four-hour bus ride, he will also have to deal with my ticcing. He was actually very responsive and thanked me for my honesty. Suppression is usually our first agenda, but not today. I’m completely out of my comfort zone. There will be no suppression on this four-hour bus ride. I’m just pretty much praying he doesn’t start sneezing, or coughing.

I’ve done this ride dozens of time, but always in the comfort of my own car where I can tic with no problem. We’re ten minutes into the ride, and I have an overwhelming feeling to just burst out crying. We’re actually going to pass by my house in about 10 more minutes, and I’m trying to control the urge to just get off of the bus, get out, and go home, but I won’t. If I do that, I’m just giving in to my disability. I think I’m going to try to channel that super hero inside of me and make my way through this.

I’m trying to suppress my tics as much as I can, I mean I don’t want to punch the guy next to me. My neck shoulder and throat clearing are the ones I really can’t suppress, so those are the ones he has to deal with. In all honesty, I could of just triple dosed myself on Klonopin and passed out, but I think writing about my experience will be more interesting — especially for all of my readers.

Speaking of Klonopin, I guess the big question on hand is, three weeks of medication, but are they working? It’s still somewhat hard to say. This week has been so crazy with work I’m confused on what I’m actually felling. This week I have been doing a freelance job doing hair for a musical. Besides being a very stressful situation, I’m also just overly exhausted.

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