I spy new science on tic relief

spies

Everyone in my group is kind of freaking out about tics, including me. Not sure if it’s Christmas or the weather or just stress from school, but they are in high gear.

As a background, most of us have kids between the ages of 8 and 12 — the majority being boys.

Most of us moms are trying super hard to “accept” this condition and all that goes with it — the ADD or the OCD, the “spectrum” like symptoms ranging from obsessions over video games to underlying defiance.

Lest any of you are new to the TS scene, let me reassure you that NONE of the kids in my private group are seeing shrinks for outrageous behavior that is often associated with Tourettes in the media. In fact, the more parents of neurotypical kids I chat with the more I see that talking back, wilfulness, and general lazy butt behavior is developmental for all kids.

The best thing I’ve discovered is to not freak out about any “issues” being TS-related, but simply treat them the way I would treat my own daughter’s turd like the-world-revolves around me attitude at times. This entails a “It’s my home/my rules” full frontal attack.

I don’t feel bad about it.

I don’t spend give Tourettes a free pass for bad manners, selfishness and poor attitude.

For the most part, I’m realizing that tics are here to stay and the best thing I can do as a parent of my beautiful son is to encourage his gifts, not obsess about his “flaws” that — let’s get real — are not really flaws. Continue reading

Money matters: Presentation on financial planning for children with disabilities coming to NJ on 11/7

We encourage anyone within driving distance of Denville, N.J., to take advantage of this valuable presentation!

The NJCTS Parent Connection at Morris/Sussex scored a successful debut on September 12 when it bridged the gap for parents of children with Tourette Syndrome and other associated neurological disorders who often find it extremely difficult to locate, get to know and ultimately bond with other families struggling to mitigate through similar circumstances.

The Tourette Syndrome Association of New Jersey, in collaboration with the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS), hopes to build on that momentum when it partners with the nationally renowned Cole Shotz law firm to foster a discussion about establishing trusts to provide financial security for children with disabilities at the next NJCTS Parents Connection at Morris/Sussex meeting on Thursday, November 7, at St. Clare’s Hospital, 25 Pocono Road in Denville. The meeting will run from 7 to 8:30 p.m.

The NJCTS Parent Connection is a bi-monthly meeting designed to provide face-to-face discussion, encouragement, friendship and networking for TS families through focusing on coping strategies. Tourette Syndrome – an inherited, misdiagnosed, misunderstood neurological disorder that affects 1 in 100 children – is difficult to live with and often can be very complicated and frustrating for fathers and mothers.

Part of that difficulty includes coming up with the necessary funds to combat the sky-high cost of caring for a child with a neurological disorder, such as TS, or another disability. A lack of planning – whether or not the use of a trust is involved – can negatively impact a family’s ability to receive government assistance for their child. During this meeting, discussions on the funding of trusts, financial planning and issues such as the designation of a guardian for a child with special needs upon his or her attainment of age 18 where appropriate will take place. A question-and-answer session will follow the Cole Schotz presentation.

“Parents of children with Tourette Syndrome often express the need to connect with other families in their area,” NJCTS Family Outreach and Volunteer Coordinator Leanne Loewenthal said. “The NJCTS Parent Connection is an opportunity to get to know parents nearby and share the joys and challenges – including financial ones – of living with a child diagnosed with Tourette Syndrome. A support network of others is vital to a family’s success, so we hope all TS families in the Morris/Sussex county area seek to ‘make a connection’ at this important, informative event.”

The NJCTS Parent Connection at Morris/Sussex is scheduled to meet in 2014 on January 2, March 13 and May 8. If you do not live in the Morris/Sussex county area, there are four other regional NJCTS Parent Connection locations throughout New Jersey:

  • Middlesex/Union counties: JFK Medical Center in Edison
  • Somerset/Hunterdon counties: Somerset Medical Center in Somerville
  • Atlantic/Ocean counties: Richard Stockton College in Galloway
  • Burlington/Camden counties: Virtua Hospital in Marlton

Families interested in participating in the November 7 NJCTS Parent Connection at Morris/Sussex should RSVP by e-mailing Leanne Loewenthal at LLoewenthal@njcts.org. As a NJCTS Parent Connection date approaches, please stay tuned to www.njcts.org for updates on if the group still will take place on that date.

We just want our son to be happy

When you find out you’re pregnant, you are the best parent you will ever be. Everything you do will be perfect, your child will be well behaved with good manners, an excellent student, an athlete, president of the student council, or join every club you did.

The first time I felt Jacob kick I knew that was my little soccer star. As I planned out his childhood while pregnant, he continued kicking and pushing on me. The first time the doctor put him on my chest, I felt fear like I have never known. How do I keep this baby alive, much less turn him into the soccer star I imagined?!

Today, I got mad at Jacob for repeatedly telling me the same story I told him last week. He always repeats my stories back to me several days or weeks later. I used to think he was searching for validation or something like that. Now I know he just can’t help but do it, no matter how many times I tell him to stop.

I have to remember to breathe, tell him it’s OK, but no, it’s really not a good time to rehash my latest story. I close my eyes and remember the first time I saw him in the delivery room, how perfect he was, and how everything changed for me. Little did I know that he would eventually change me in ways I could never have imagined.

His first year was a blur. He was so busy, always moving, laughing, kicking, wiggling, and entertaining us with his silly ways. He was adorable and sweet but BUSY. He has never been still. He eats well and always has. He was spirited as a toddler. We did the terrible two’s for two years with him. When he was almost 3, we had our second son.

Jacob was loving with him after getting over a bit of jealousy. But it took another year for his behavior to improve. He wouldn’t sit still for story time and hated being read to. He wanted to be up and playing. He wouldn’t stop to color. He slept pretty well but that wasn’t surprising because he was always going when he was awake.

Around the age of 4, I started noticing things — little oddities here and there that I couldn’t put together. There was just something different about him that I couldn’t put my finger on. Continue reading

Still thinking about Camp Bernie

It has been just over a month since my family and I attended the annual NJCTS Family Retreat Weekend at Camp Bernie for the 5th time, and I am still thinking about the experience.

Every year, I look forward to catching up with folks that I only see at the retreat, participating in the support-group discussions with other parents, and enjoying the camp activities. Reconnecting with our old friends, and meeting new families, reassures my wife and me that we are not alone in the struggles (and unique joys!) of living with children affected by TS.

This year, despite my wife breaking her ankle just before the teen discussion panel (!), I left camp rejuvenated and inspired.

What I look forward to the most at Camp Bernie, however, is watching my daughters. It is one of the few places outside of our home that they can tic with little to no anxiety or embarrassment, and it provides them with a valuable opportunity to interact with others that have TS.

The welcoming environment not only makes them feel that they are an integral part of a larger community, it fosters their confidence in who they are and what they have to offer.

My younger daughter, who has been very resistant to standing on a stage, spent hours practicing with her sister to perform in front of everyone at the talent show, while my older daughter, recognizing that what she has to say is important and may help others, participated in the teen discussion panel.

Over the years, I have watched them grow to be self-assured kids who advocate for themselves and others, and their experiences at Camp Bernie have undoubtedly been an important part of this process.

The annual retreat has had a tremendously positive impact on our lives and others who attend. I look forward to participating in future years and meeting new friends, watching our old friends continue to grow, and, most importantly, taking my daughters to a very special place where they can just have fun.

Laugh out loud

Ever have one of those laugh or cry moments? Tourette Syndrome can be frustrating, overwhelming, maddening, etc., but it can also be funny or silly. I’ve had people ask me this question soooo many times and I’m thinking: Where do I start? Do you want the manual?

SO WHAT TICS DO YOU HAVE?

tumblr_inline_mnn48ppweM1r1ma4eI love the above meme because it illustrates the answer to this question so perfectly. What I usually do when asked that sort of question is just rattle off the first dozen or so that come to mind.

So the meme out there these days for all of us Touretters is Tourette’s Toucan! Some of them are funny or awkward, some are just irritants that we experience, and mostly all of them are relatable. If you click on the link attached to the site name and click on “Memes only” in the bottom right hand corner, you can take a look at all of the ones posted so far, but for today I’m going to name a few moments of my own. If you don’t have TS or don’t know a whole lot about it, some of the memes may be confusing, so feel free to ask! Continue reading