WANTED: Participants for educational, fun upcoming events!

Here are a few events coming up that are associated with the New Jersey Center for Tourette Syndrome. NJCTS offers many programs and services to the TS community., many of them geared toward kids and teenagers. We strongly encourage you to check out these events and consider signing up for, supporting and/or attending as many of them as possible!

April 5: Deadline for the NJCTS Children’s Scholarship

April 5: Deadline for the Educator of the Year nominations

April 7: “Mirror Mirror” to be shown in sensory-friendly format

April 11: Webinar on classroom accommodations for those with Tourette

April 29: Tourette Syndrome Awareness Day with the Somerset Patriots

May 11: Deadline for YMCA Camp Bernie retreat applications

May 21: Dare To Dream Student Leadership Conference at Rutgers

June 8-10: Eighth annual YMCA Camp Bernie family retreat weekend

 

Tourette Syndrome Awareness Day is about increasing our circle of understanding

My son slipped off a garage step yesterday, tumbled into the recycling bins — scattering cans and plastic bottle tops — and smashed my new cell phone that was in his hand onto the concrete floor.

He is fine, the mess is cleaned up, and now when I use my cell phone with the shattered screen, I’m reminded for the 100th time today that he has Tourette Syndrome — that he tends to be clumsy because of this disorder, and that — sprawled out on the garage floor, looking up at his sister, our neighbor and me — he was feeling only the first of many embarrassments to come throughout the course of his fifth-grade day. 

As parents of kids with TS, we live in homes with cracked phone screens, frequent spills, holes in walls and countless casualties of complex motor tics, scarce impulse control and fits of rage.

In addition to our kids and their ticky selves, it is these artifacts that remind us that — no matter how badly we’d all like to blend in — someone in our family has TS, and our blending privileges have been suspended — at least for now.  We are never short on reminders that our kids have TS — to the contrary, we are excruciatingly aware that this disorder is ours, to live with, overcome, research, treat and cure. Continue reading

David Finch & Asperger’s: A great read!

The more I research high-functioning Asperger’s, the less sure I am that my son has it. I’m not so sure about my husband, however.

I recently reviewed David Finch’s New York Times best-selling book The Journal of Best Practices: A Memoir of Marriage, Asperger Syndrome and One Man’s Quest to Be a Better Husband. While my mate is far less quirky than Finch, the rigidity and adherence to routines is spookily similar.

Frustrated wives might claim that monumental self-obsession is just being a male. But combined with occasional tantrums and inability to really understand what another is going through? Could be Asperger’s.

With Aspergers being co-morbid with Tourette Syndrome, I encourage many of you to check out this book. It’s entertaining, informative and just plain encouraging. Everyone has something — it’s our attitudes about it that make all the difference.

Daily Tourette Syndrome Links: Wednesday, March 21

Here are the past few days’ Tourette Syndrome-related links from websites all over the Internet. This is just another way TSParentsOnline hopes to help the parents of the TS community. Also, we are looking for more parent contributions. We would love to hear from you! Thanks!

Canadian Trek for Tourette nearing $500,000 in all-time donations

College student doesn’t let Tourette Syndrome keep him down

TS doesn’t stop dreams of New York co-ed

James Durbin steps up his star power

Video: A teen’s take on Tourette

Top-notch Pennsylvania teen bowler battles Tourette Syndrome

Video: Dealing with TS

NJCTS webinar series continues March 28 with presentation on sleep

Connor’s Cause: Tourette Syndrome Awareness

A glimpse at life with Tourette

 

Daily Tourette Syndrome Links: Wednesday, March 14

Here are the past few days’ Tourette Syndrome-related links from websites all over the Internet. This is just another way TSParentsOnline hopes to help the parents of the TS community. Also, we are looking for more parent contributions. We would love to hear from you! Thanks!

Living with Tourette Syndrome: Coprolalia

“People make fun of me every day of my life, and I’ve had enough”

New York Democrats looking to add $168,000 to budget for Tourette

Are my 6-year-old’s twitches TS?

A college student’s medical look at Tourette Syndrome

It’s OK to have Tourette

More than 35 Congressmen now signed on as co-sponsors of HR 3760

Is re-wiring the brain possible?

Circle of Moms: Almost 10-year-old with TS

LeRoy students showing improvement under treatment

South Brunswick students learning about living with Tourette Syndrome

Life with a Twitch: My life with Tourette Syndrome

BBC to debut singing show for people with Tourette

 

Educating about TS: It’s amazing what can be accomplished!

12-year-old Tess Kowalki, right, talks with South Brunswick High School student Elizabeth Browne following Tess' in-service presentation about Tourette Syndrome on March 5.

Last week, I proudly watched my daughter Tess give a presentation on her life with Tourette Syndrome to a high school class in South Brunswick. I was amazed at her poise, confidence and desire to educate others about TS. The students were listening intently, and — when given an exercise designed to simulate ticcing while writing — got an appreciation of what it’s like to deal with the condition.

I have always been a strong believer in the power of advocacy and education to de-stigmatize Tourette and other disorders. As the students watched Tess, I hoped that they would empathize with her and view her desire to speak to them as a call to make a positive change in how they view TS and people who suffer from it. Continue reading

Tourette and its co-morbid conditions: ADHD, OCD, Asperger’s

Photo taken of my kids at the beach in February. Yes, February. Apparently life exists outside of electronics and it is possible to go screen free and maybe, with any luck, reduce tics. Wish me luck.

In my last post, I talked about my son’s big UCLA Tourette Syndrome follow-up appointment. The doctor took a lot of time with both of us, and the overall consensus was that, yes, Stink has some attention issues. Stink tics mildly to moderately. The doc doesn’t feel Stink needs meds for his tics since he’s not being affected socially or academically.

That all said, meds are not out of the question. We have the option of having Stink tested for free at UCLA for an actual diagnosis of something other than TS — be it ADHD, high-functioning Asperger’s or what-not.

If Stink qualifies for Asperger’s, he can start an eight-week trial through UCLA where they will put him on Intuniv and monitor his blood pressure/reaction on a weekly basis. Of course, this is a blind trial, so Stink might just get a placebo, which means we’re driving in two-hour traffic each way for a sugar pill which is kind of not really on my gluten-free/casein-free/food dye free/eat-everything-that-tastes-like-butt diet.

There’s also the issue of Stink’s blood pressure, which tends to be 85/55. With Intuniv’s side affects being to lower blood pressure, I’m taking a chance that Stink will faint, black out or perhaps just not get up easily in the morning. Continue reading

New book aims to help children with food allergies

I am excited to share the publication of my book, Nurse Teddy Bear Learns About Food Allergies. The book is a delightful yet informative story that would help all children, with or without allergies, learn more about food allergies.

Nurse Teddy Bear Learns About Food Allergies talks about how preparing your allergic child for school can be challenging. This book walks a young child through her first day of school, guided by Nurse Teddy Bear, and introduces people, places and concepts that the child and parents need to know.

The book can be purchased through Amazon.com, and more information about it is available by visiting the book’s website. Please share the book and encourage anyone you know that could benefit from the information to purchase the book.

As for my connection to Tourette Syndrome, I have done in-service presentations for many years in Bergen County, N.J., and have gone into schools to educate faculty and peer facilitation.  I am the parent of an adult daughter, who just made me a grandparent this month.

California family a success story despite family history of tics

My name is Cheryl, and I live in the Central Valley of California. I am the mother of one son with severe Tourette Syndrome and another with moderate to severe OCD. They are both now in their late 20s but were diagnosed in fourth and sixth grades, respectively.

My husband and I and our sons have survived the journey with many bumps and bruises along the way…but we did survive and even thrive, even though it wasn’t the journey we expected.

All in all, I believe we raised both of our sons to talk intelligently about their conditions to others (especially authority figures who were always questioning them), have compassion for others with differences (both will take the side of an ‘underdog’ in a heartbeat), and know that home is always a safe place for their tics and routines (despite about a year of all of us wearing ear plugs because of a screaming tic phase.  🙂

Our youngest with TS still lives with us, but he is working part-time and has a girlfriend.  I must say that during junior high and high school, we never thought things would improve for him!  There are still struggles with several long-time tics (including screaming and coprolalia) and he has what I call “add-ons,” such as mood fluctuation, irritability and depression. But he is doing remarkably well for the places he’s been! Continue reading

Daily Tourette Syndrome Links: Wednesday, March 7

Here are the past few days’ Tourette Syndrome-related links from websites all over the Internet. This is just another way TSParentsOnline hopes to help the parents of the TS community. Also, we are looking for more parent contributions. We would love to hear from you! Thanks!

South Brunswick High School students learn about Tourette Syndrome

From heartbreak spring creativity and a design studio

Will the real “mystery illness” please stand up?

Living with Tourette Syndrome

Do I have Tourette?

Tourette Syndrome: Tics, Obsessions, Compulsions

TS lecture by author Marc Elliot coming to Marlboro, N.J.

James Durbin joins the Be A Star Alliance

Musician, teacher doesn’t let Tourette define him

Singer speaks out against peer bullying

Inspirational high school athlete with TS honored

How does Baclofen help people with Tourette Syndrome?

Presentation on Tourette, associated disorders coming to Raritan Valley Community College