Proud to be me

Posted on May 24, 2013 by BrynneJ

In all walks of life there are many people who would have one conceal certain things about oneself in order to preserve some social fantasy that they keep in their head, some picture that they harbor of how people should and do view them. I have touched on this subject before, but my heart especially goes out to those who are made to feel ashamed of their disorder in one way or another.

This doesn’t just apply to those with Tourettes, but also those who have other medical issues that can be considered a social stigma. I’m not saying anyone has to broadcast their disorder or should be known by it, but, they should not have to feel as if they are an inconvenience.

I was blessed to be raised in a family who let me be myself with and without TS and was encouraged instead of put down. I was always told that I would be able to do wonderful things, not just in spite of, but also because I have TS. I would be able to relate to people in a way that not everyone else can and I would be able to see people in a different light, because I, myself, had been there. I have experienced my own share of negative encounters with people because of the simple (or not so simple) fact that I have TS — some of these I have shared with you.

You may argue that learning of a person’s disorder can change the way some people think about them or the way they treat them and you would be right. I have encountered such ignorance through my own eyes; but really, do I want to be close to and hang around people who think that way with such unwavering diligence?

When I have children someday there is a 50% chance that they will be born with Tourette Syndrome and/or one of the other co-morbid disorders that I have. Society will do the job of making one self-conscious, ashamed, embarrassed, etc. about one’s disabilities. Therefore, it has no place in the family.

To anyone out there with children who suffer from such things or perhaps they themselves do, I would say, your disorder does not define who you are, but it is an integral part of who you are. Learning how integrate your “TS self” and how to live harmoniously with it instead of constantly fighting it is vitally important not only for your own peace of mind and body, but so that you may also be an example to others.

Poetry provides a much-needed break

Posted on May 23, 2013 by AndreaF

I am knee-deep in tic writing, and sometimes I just need a break.

Before my mammoth adventure into book writing, I had started a collection of poems — “just because” poems based on my kids and my zany family and fueled by love of anything Seuss and Shel Silverstein.

I don’t purport to have the talent of either of these brilliant writers, but I hope to finish my collection of work nonetheless.

Here’s one I wrote. Would love to know what you are doing to keep yourself busy. Send me to your websites if you have one, even if it’s a business. I’d love know you more.

The following poem was inspired by Stink. It’s a true story about something that happened to him in first grade. He still has his pink Scooby Doo umbrella (or as we like to call it, his “parasol”), and our family couldn’t find him more weird and charming for it God bless the independent thinkers of this earth! Continue reading →

Misery loves company, and I love you!

Posted on May 22, 2013 by AndreaF

The other day I was knee-deep in Chapter 9 out of 12 of my book. For reasons that have yet to be explained (other than sometimes stories take time, especially when you are living them), I am well on track to having this book done by the time my kids get out of school. Two years to get 9 chapters done (including an intro) and 4 weeks to finish the last 4? Sure. Like tics, it just is what it is.

Despite feeling excitement about wrapping this sucker up, I am feeling a bit of fear and angst, too. “What if no one cares? What if the TS community likes it, but the rest of the ‘special needs’ mamas out there think I’m a whack job? What if instead of being supportive I come off like nothing but a whiny freak job? And, the big question that begs for an answer: What if I can’t get an agent to back this?”

Such normal doubts and fears accompany artists of any kind, which is what makes their journey so exciting. With it, luckily, comes confirmation. For me, this came in the form of an email from someone in my private Twitch and Group:

Her son’s vocals are currently out of control.

As it turns out last month, so were my son’s. And, as I did, she told her kid to “Please Stop It Now!” and then went through a bottle of wine and, guess what, the tics are still there! Who knew. While I never want to see a fellow mother suffer, I saw this as having two meanings:

I am not a nut job. We all go thru rough times. Thank God we can express it to each other.
My book is on the right track. She called me right as I was finishing a chapter on the very subject.

Mamas out there, I want you to know that there’s a lot I don’t know. I care if you ever buy a copy of my book, but buy this: YOU ARE NOT ALONE. YOU WILL GET THROUGH THIS. I PROMISE.

That promise comes guaranteed, signed and stamped by the production house of Andrea Has Been There And Has Not Yet Been Committed to the Nut House.

Until next time, hug that ticker of yours today!

Camp Bernie weekend gets better with big contributions

Posted on May 21, 2013 by TSParentsOnline

The New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) would like to thank five important contributors to the 9^th annual Family Retreat Weekend, which will take place June 7-9, 2013, at YMCA Camp Bernie in nearby Port Murray.

The Brad Cohen Tourette Foundation in October 2012 issued NJCTS a grant to underwrite the cost of kids and families attending the event, which each year attracts scores of families affected by Tourette Syndrome in New Jersey and the surrounding region.

For the past five years, the HAPI Foundation has provided NJCTS with a generous donation, which also is used each year to offset the cost of camper registration and operating expenses.

And this year, Wegman’s, ShopRite and Costco have supported Family Retreat Weekend efforts by providing food, beverage and/or monetary considerations.

“We are honored to receive contributions from each of these valued partners, which demonstrate a dedicated commitment to serving children and teenagers with TS,” NJCTS Executive Director Faith W. Rice said. “We believe the tools and strategies delivered at our Family Retreat Weekend address issues TS children and families face each day, and we are grateful that the Foundation has partnered with us in our quest to provide support for the 1 in 100 kids affected by this often devastating neurological disorder.

NJCTS welcomes more than 200 children, parents and siblings each June to YMCA Camp Bernie for an enjoyable weekend of self-esteem building and empowerment in a camp setting. Aside from canoeing, fishing, campfires, a talent show and myriad other fun activities, children bond with other TS kids. Parents form support networks and families also participate in skills training workshops.

More information about the Family Retreat Weekend is available by calling 908-575-7350 and by visiting www.njcts.org or right here on TSParentsOnline. More information about YMCA Camp Bernie is available by visiting www.campbernieymca.org.

No, I’m not lucky … I can’t just swear all the time

Posted on May 21, 2013 by KateE

I yell random sounds, I twitch and I jerk until I’m in physical pain. When I explain to a stranger that I have Tourette, one of the most common responses is, “You’re so lucky, you can just swear all the time.” I wish I could just swear right back at them, but I’m one of the vast majority of Touretters who do not experience coprolalia.