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Category: Resources & Support

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Layers of Tourette Syndrome

https://tourette.org/layers-of-tourette-syndrome/
If there’s one thing Tourette’s knows how to do well, is being unpredictable, and everything changes all the time. For me, tics got relatively worse after my teens, and the (um, literal) pain of it is what shocked me enough to do some digging into “what is up with me”. But, I guess I’m pretty used to ticcing by now. It’s something I’ve done since I was 9, as far as I remember, and it can be annoying, and the absolute worse, but also, just fine. What I never saw coming, though, was how wild the *other* side of Tourette’s would get for me. Because it’s not just tics...
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Boy Reading

15 Days of School

https://tourette.org/15-days-of-school/
15 days of school. 4 telephone meetings. Daily behavior report cards and multiple emails. He’s six years old. He hates himself because he “can’t be good”. My fun loving, intelligent, intuitive son has had maybe three full “good” days of school. I believe there are certain parents who have pulled away from us because he is a “bad” kid and they do not want their children influenced. We have had BIP’s, IEP’s, a 1:1 and yet still school sees a different version of the child I see. I’ve been asked questions like, “Has anyone said he has ADHD or mentioned ODD to you?” The answer is no. The answer is I wish I had an answer.
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September TouretteConnect web header

TouretteConnect – September

https://tourette.org/touretteconnect-september/
The month of September is National Suicide Prevention Awareness Month. I am grateful for the continued public awareness and open discussions about this very serious topic. In a recent Impact Survey led by the TAA, an alarming 51% of adults and 32% of parents of children with TS reported to have considered suicide or participated in self-harming behaviors. In light of this, there are a number of helpful organizations (AFSP, NIMH, NAMI) and resources to support you and your loved ones, including Chapters and Support Groups across the country. Please know that if you need help, there is always someone to call. A Support Group Leader from the TAA Florida Chapter shared a personal story about how suicidal thoughts impacted her family that really hit home for me.
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Mom and Son

OCD in Tourette Syndrome – A Primer for Parents and Families

https://tourette.org/ocd-in-tourette-syndrome-a-primer-for-parents-and-families/
Join the TAA for a FREE webinar where Dr. Erica Greenberg will discuss the basics of obsessive-compulsive disorder, including when and how it typically presents and the current treatments options. She will focus on “early-onset” OCD - OCD that arises in late childhood and/or early adolescence and will discuss in detail “Tourettic OCD” – the type of OCD more frequently seen in children/adolescents with tic disorders. Dr. Greenberg will also discuss how to begin to separate OCD-compulsions from complex tics, and why that differentiation may be informative from a treatment perspective.
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Presentation

Everybody is Somebody in New Mexico

https://tourette.org/everybody-is-somebody-in-new-mexico/
The Tourette Association of America (TAA) Tourette Syndrome Health and Education Program (THEP) delivers presentations and educations across the nation to the people in the Tourette Syndrome and Tic Disorder community, the general public, physicians, allied professionals, and school personnel. After an intense and unfortunate bullying situation occurred, Albuquerque’s Public Schools sought out an education opportunity to enlighten students and administrators. Representatives from TAA traveled to New Mexico on September 10 and 11 to deliver a powerful educational experience about Tourette Syndrome and Tic Disorders to nearly 1,000 people.
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bridge

Teal for Tourette Syndrome Awareness

https://tourette.org/teal-for-tourette-syndrome-awareness/
Alexandra Cuttler and Jack Carlin are TAA Youth Ambassadors for the New York – Hudson Valley Chapter, having been trained in 2018 and 2019 respectively. Through their proactive efforts, they started the Project Lights initiative, which was their mission to light up the Governor Mario M. Cuomo Bridge (formerly the Tappen Zee Bridge) teal for the final day of Tourette Syndrome Awareness Month. This was no small task for Jack, Alexandra, and their families. The project began back in March, when the group began mapping out the process they would undertake.
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Katie D TS by the numbers

TS by the Numbers

https://tourette.org/ts-by-the-numbers/
I'm Katie Danis. Pleased to meet you. I'm an undergraduate student at the University of North Carolina at Chapel Hill. I run a public health and sex ed YouTube channel with two of my best friends. I'm training for an ultramarathon. And at age two, I was diagnosed with Tourette Syndrome. I've had the privilege of sharing my story in essay, Buzzfeed article, and video format. However, I've never attempted to quantify my condition. I've never identified the numerical impact of my TS or the life it affects. Until now.
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