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

Posted on March 13, 2012 by Tim & LeslieK

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 →

“Emily’s Tic” is perfect for educating kids about Tourette Syndrome

Posted on February 9, 2012 by FlorenceF

My daughter has published a children’s book called “Emily’s Tic” about Tourette Syndrome, and I could not be more proud of her. I’d like to tell you a little bit about the book and how you can obtain it, as it is perfect for teaching young children about TS.

Emily decided to write the book based on her own story. She was diagnosed with TS when she was 6 and didn’t really begin talking about it until two years ago. It took her a while to accept that she had Tourette, but once she did, she could not be stopped! Advocacy was the name of the game for her, and she wanted everyone to know about TS.

As she has grown throughout high school — she is now a junior — Emily has spoken at schools about TS and advocated a strong anti-bullying message. All of that comes across in the book, which is adorable, self-illustrated and gets across all the facts about Tourette.

A paperback copy is available on amazon.com for $9.13 OR if you have a Nook, Kindle, iPad, or iPhone you can download the book for just 99 cents! Here’s what you do if you have an iPad/iPhone: Download the FREE Kindle app. Then go to amazon.com via that device and purchase Emily’s Tic. It will immediately download to Kindle. On Nook or Kindle devices, simply search “Emily’s Tic” by its authors, Emily and Florence Fleischman

It would be so great it if you could purchase or download the book — not for Emily, but for all of the kids out there who need to know more about what it means to have Tourette Syndrome or what it means to understand someone who has it. It also makes a perfect gift for elementary school teachers to read to their students! Thank you!

A Tourette Syndrome mother’s long journey, part 4

Posted on February 8, 2012 by ChristinaD

This is the finale of a 4-part series from a California mom detailing her struggle to get the right care for her Tourette Syndrome son. You can read part 1 here, part 2 here and part 3 here.

I have learned a lot when it comes to how individual-based Tourette’s can be. Though there may be many common denominators, the tics and disorders vary with each individual. My son’s current tics are knuckle cracking, toe cracking, shoulder shrugging, eye flinching and tapping or touching. He also has a hugging tic. He only does this tic when he is around people he connects with.

He also has three very odd, but very real daily tics of “I love you mom,” “You are so beautiful” and “You are the greatest.” It is absolutely a great thing that it is not Coprolalia. If you were around us in a room, you would see the hug in combination. Yes, they are confirmed tics and he has had them for a few years.

His little sister is not happy about his tapping/rubbing on the top of her head made just for her. I feel very fortunate that his tics are mild in comparison with how challenging and difficult other people with TS are faced with. Continue reading →

A Tourette Syndrome mother’s long journey, part 3

Posted on February 7, 2012 by ChristinaD

This is part 3 of a 4-part series from a California mom detailing her struggle to get the right care for her Tourette Syndrome son. You can read part 1 here and part 2 here.

The school district my son is in, apparently like many others, are resistant to accommodations. I had to push and become less than favorable in order to get more support at school for him.

The staff at Spencer’s school were resistant to any diagnosis because they did not want to deal with him. The reasons why people go into education has been lost with many teachers, who only want to work with those who fit into that “perfect student” mold.

Even though my son had the Tourette’s diagnosis, I still had a lot of resistance when it came to getting my son accommodations he needed. Even though it is mandatory to follow an IEP, it takes the parent staying on top of it to make sure it is being followed. I had a special IEP meeting and was thankful to have Susan Connors speak on my behalf via speaker phone.

The principal actually had the nerve to call Susan beforehand to try to get her to convince me to move Spencer to another school. Susan informed me of this beforehand in a private call. I could not believe the audacity to do this, especially given Susan was advocating for my son! Continue reading →

10 Ways You Can Help The Tourette Syndrome Movement

Posted on January 23, 2012 by TSParentsOnline

Over the past two weeks, the Tourette Syndrome Foundation of Canada has been doing a Top 10 New Year’s Resolution lists of ways their communities north of the border can help spread advocacy, awareness and education about TS.

We at TSParentsOnline love this idea and want to share all 10 of these blog entries with you. Please note that many of the ideas listed in these entries can be applied to the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS), which birthed this blog and helps tens of thousands of people with Tourette in New Jersey every year.

So sit back, relax, enjoy these good reads, and then perhaps think about how you might help NJCTS and the rest of the TS community today, such as taking part in Tourette Syndrome Awareness Day! You’ll be glad you did!

For more on Tourette Syndrome resolutions, please check our TSParentsOnline’s post about New Year’s Resolutions. We still would love to hear from you!