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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.

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  1. Thank you for sharing your story with us Christina! I’m hoping to be the same kind of advocate for my children as your mom was for you! Glad to hear you are doing well!

  2. Then, I really started to like this neorologist and eventually started seeing him once every six months for an appointment. I eventually transferred to Mendham highschool and caught up to my grade level at Huntington Learning Center. Now, I am twenty six and enrolled at CCM trying to pursue a degree in psychology.

  3. Also, my condition caused me to have learning delays through out pre- school, middle school, and junior highschool. My mom had to advocate for my rights since teachers thought I could not learn or twitched in class for attention. In the past, doctors told my mom that I did not have TS and mis- diagnosed me. I continued having learning delays and was behind, so my mom had to send me to a special ED school for children with disabilities called “ECLC”. My mom did not want to send me regular public high school because she did not think I was ready, grade wise, and was trying to protect me from being bullied or teased. Around sixteen, I started to see a neurologist who had a son with TS. He told my mom, “you should have brought your daughter to me when she was little!”

  4. Hello, I am aware of this condition want everyonr to know that I have it! I was diagnosed with TS around seven years old and understand what your daughter went through trying to control her obsessions. When I was only fourteen, I used to obsess over my body and was worried about looking too petite.

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