Camp Bernie weekend gets better with big contributions

The New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) would like to thank five important contributors to the 9th 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.

“Best weekend of the year” is coming … are you ready?

The New Jersey Center for Tourette Syndrome & Associated Disorders’ (NJCTS) 9th annual Family Retreat Weekend is coming up fast! Taking place June 7-9 at YMCA Camp Bernie, the weekend once again promises to be the “best weekend of the year” — even moreso after NJCTS received a generous grant from the Brad Cohen Tourette Foundation to help offset the cost! If you’re going, here’s a little of what you can expect:

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The staff at YMCA Camp Bernie has been renovating and cleaning the swimming pool so that campers this summer can enjoy it!

FRIDAY

  • After check-in and prior to our usual campfire, join in a pick-up game of basketball or volleyball. Then sit back, relax and bask in the glow of a roaring, warm campfire — complete with s’mores and glow necklaces!

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Retreat Weekend for New Jersey Tourette Syndrome families

CampBernie2The New Jersey Center for Tourette Syndrome & Associated Disorders’ (NJCTS) yearly Family Retreat Weekend has been a source of fun, inspiration, learning and encouragement to individuals with TS and their families for nearly a decade. Many memories have been made, and myriad more are sure to be captured in 2013!

NJCTS is proud to announce that “the best weekend of the year” will return to beautiful YMCA Camp Bernie for the 9th annual Family Retreat Weekend on June 7-9. Registration is now open for this exciting event, and NJCTS encourages you to get your family signed up right away by filling out an new easy-to-use online registration form. The registration deadline for this year’s weekend is May 10, and the cabins fill up fast so don’t waste timing signing up!

Scores of New Jersey families flocked to YMCA Camp Bernie for last year’s event, and every single one of them had the time of their lives. Here’s what a few of them had to say: Continue reading

Connecting with other parents is vital with Tourette Syndrome

Hi!  I never thought about participating on the blog before, but ran across it today and thought that it sounded like a good idea. As a parent of a 17-year-old boy with Tourette Syndrome, my experiences over the years might serve to help parents deal with a new diagnosis.  We have been through much, but survived.  Our son is doing well now.

Over the years, the New Jersey Center for Tourette Syndrome has offered a lifeline to many. We have taken advantage of the wonderful family retreat weekends at Camp Bernie and found that networking with other parents there has proved a valuable resource.  We found our son’s doctor through another parent at camp.

Thank you for providing a forum through which parents can connect and be comforted. I will look forward to participating.

At Camp Bernie, there’s no such thing as “bad parenting”

The thing about eating out in public with a child who has Tourette Syndrome and its associated disorders is that it gets a little dicey.  Ok, sometimes a LOT dicey.

The first hurdle of the evening when going out to dinner is the stimulation imposed on Bean by the restaurant…loud music and voices, lots of people all sitting in close vicinity to each other, lots of movement as servers fly by with giant trays of food and drinks, many different and pungent smells, having to wait to be seated, having to sit where we’re told, not to mention the décor…everything starts assaulting her senses the minute we step in the door.

Sometimes these things don’t seem to bother her so much; perhaps she’s had an especially good and low-stress day and she is well rested and in good spirits and her “sensory cup” has room left for such a rich sensory experience that day.

The next hurdle we must face is her OCD which is also assaulted at a restaurant…she must sit in a chair that is different in a spot that is different with plates and utensils that are different, the food may not be how she expects it to be, there may be people sitting too close to our table, or a dirty spot on the table, or perhaps a garnish on her plate that deems the entire meal inedible.

On the occasions that her OCD isn’t bothered greatly by the restaurant, we have to next deal with the ADHD.  That means Bean cannot sit on her chair, she needs to fidget on her chair, stand up, bounce, go to the bathroom several times, she cannot wait to be seated, cannot wait to be served, cannot wait for her drink refill to arrive, cannot wait to leave when she’s done.

She is too distracted by the games on the kid menu, or munching on tortilla chips, to focus on deciding which meal she’d like.  And even after she decides, she often changes her mind several times — absolutely unsure which choice is the best. And if we make it through all of that, there are always the tics. Continue reading