Tourette Syndrome Awareness Day helped me connect with NJCTS, this blog

My daughter is 12 years old and was diagnosed with Tourette Syndrome when she was 5. Despite being a psychologist, I did not recognize her symptoms as TS initially, and even after the diagnosis was terrified.  I have since learned quite a bit about Tourette and am much more at peace with it.

Then, at age 7, my daughter was diagnosed with OCD. The OCD has become increasingly more of an issue than the tics from the Tourette.  Despite being an A-plus student, my daughter struggles with intrusive thoughts and had much difficulty adjusting to middle school this year.

Things are gradually improving now that she is on medication and has been receiving much support and accommodations from her school. My daughter “graduated” from the Tourette Syndrome program at Rutgers University after participating for one year in therapy for Exposure/Response Prevention at age 8.  She continues in Cognitive Behavioral Therapy (CBT) today.

My younger son has been exhibiting more tics over the past year, although they seem to be primarily motor tics and are less severe. I don’t believe he would meet the criteria for TS at this point, but surely he manifests some form of tic disorder.  Nonetheless, we are keeping our eyes open.

My son and I were at the Patriots game this past Sunday for Tourette Syndrome Awareness Day and saw the TS ceremonies before the game.  I sought information at the NJCTS table at the stadium during the game, as well as purchased bracelets for both of my children.

I was impressed by the supportive connection I witnessed among the girls on the field after the ceremony. I would love for my daughter to have a chance at that kind of support.  I am looking into participating in Camp Bernie from June 8-10. And I hope that I can both receive and contribute support to other parents of children with TS via this blog.

Thank you NJCTS for wonderful stories and a wonderful Tourette Syndrome Awareness Day!

Just a quick note to say that these write-ups are truly awesome, and how great to enlist Rutgers to pass them along!

TS AWARENESS WEEK: Rutgers students learn about clinical side of Tourette

TS AWARENESS DAY: Teen takes pride in Tourette advocacy

TS AWARENESS DAY: Events fete afflicted Tourette kids, families

TS AWARENESS DAY: Tourette Syndrome Day at the Patriots game

In addition, I wanted to thank NJCTS for a wonderful day on Sunday at Tourette Syndrome Awareness Day. They did such an amazing job, from communicating the timing of everything beforehand, to organizing all the groups of kids in fun activities, to speaking and hosting the ceremony — they were pros, and impressive to the point that my husband and family haven’t stopped reminding me that we needed to let them know.

Thank you all at NJCTS for a fabulous day!! We were the last family to leave after the end of the game, and Ethan fought us to stay even then!! On Sunday, we were so proud to be affiliated with NJCTS (not that we aren’t every other day, too!) and you all were a big reason why. Many thanks again for a fun and important day!!

Tourette Syndrome Awareness Week: Graduate students get a dose of the reality of TS

TracyL talked about the following with first- and  second-year graduate students at Rutgers University’s Graduate School of Applied and Professional Psychology as part of the New Jersey Center for Tourette Syndrome’s first annual Tourette Syndrome Awareness Week.

I have an 11-year-old son with TS and a 9-year-old daughter who does not have it. With my son, Ethan, we had him evaluated when we started noticing language delays at 3 years old. He also would drop to his knees, then get back up and retrace his steps while walking as a toddler, and also was volatile and challenging. Those were really our only complaints early on.

But it persisted for a few years. Still, Ethan qualified for Early Intervention, made progress for a few years and was put in a regular kindergarten class. But the falling-to-his-knees tic eventually became more aggressive and started to involved jumping. It was at this time that he was first diagnosed with OCD and anxiety.

Since that time, Ethan’s tics have evolved. There’s a lot of eye blinking, shoulder shrugging and shaking of his hands, as well as spitting, which luckily has come and gone. He also has coprolalia and, as much as I hate to say it, he has become quite creative with his curses.

Still, despite all that, Ethan initially did a good job of keeping everything in at school – until a few years ago, when it got worse and he finally got the diagnosis of TS with OCD and auditory processing disorder (APD). Continue reading

Daily Tourette Syndrome Links: Tuesday, Jan. 10

Here are today’s Tourette Syndrome-related links. Usually, they come from all over the Internet, but today they are related to the many important events the New Jersey Center for Tourette Syndrome has coming up in which you might want to participate.

Each link features event information, registration forms and links to other participatory pages, where applicable. This is just another way we hope to help the parents of the TS community. Enjoy, and please give us feedback. Thanks!

Bullies Back Down When We Stand Up Poster Contest

2012 Dare To Dream Student Leadership Conference

NJCTS’ Tourette Syndrome Awareness Day with the Somerset Patriots

The National Institute of Mental Health NJCTS Genetics Sharing Program

Social skills and family support groups at Rutgers University

Wednesday Webinar on emotion regulation

 

New Jersey family with two Tourette daughters touts NJCTS programs

Eight years ago, my wife and I sent our daughter, Tess, to kindergarten. Like any child, she was anxious and a bit resistant, but attended classes during the first few weeks. By mid-semester, however, she was vigorously protesting every morning.

At about this time, she began clearing her throat, blinking her eyes and sniffling throughout the day. The frequency of these behaviors increased and eventually became disruptive and difficult for her in class.

While we initially thought she was developing allergies, it became clear to us via observation and family history that our daughter had Tourette Syndrome, a neurological disorder characterized by repeated involuntary movements and uncontrollable vocal sounds called tics.

We saw our confident, vibrant daughter become a withdrawn and depressed child battling her body, making sounds and movements she could not control. Our younger daughter, Paige, now 8 years old, was also diagnosed with Tourette and joins her sister in the struggle with this disorder. Continue reading