Free and open to the public: Tourette Association of America hosts its first Virtual Teen Summit
The Tourette Association of America (TAA) will host its Virtual Teen Summit January 9th. This summit’s theme is around Adjusting to Change, especially during such an unpredictable and challenging time. Teens will have the opportunity to connect with peers, discuss topics that are important to them, and get their burning questions answered. Teens will also be provided with various resources and learn more about the support TAA offers.
Tourette Syndrome is a neurodevelopmental disorder characterized by sudden, involuntary movements and/or sounds called tics. Tics can include eye blinking, head jerking, facial movements, throat clearing, sniffing and tongue clicking. People with Tourette Syndrome have long been misunderstood and mocked for their uncontrollable symptoms, while the stigma of Tourette takes a huge emotional and mental toll on those with the condition.
“People affected by Tourette Syndrome face challenges made harder by lack of societal understanding. We’re committed to raising awareness for teens diagnosed with this condition,” said Amanda Talty, president of the Tourette Association of America. “By fostering awareness and acceptance, we help reduce the emotional toll and improve quality of life for those who have Tourette.”
According to the TAA, 1 in 100 school-aged children in the U.S. is diagnosed each year with Tourette or another Tic disorder. 32% of children and 51% of adults have considered suicide or other self-harming behaviors, according to a recent survey by the TAA. “By educating the public, we can create a world where people with Tourette syndrome are understood, accepted and seen beyond their tics,” said Talty.
Registration is open to the public, and the schedule is available online. Topics discussed include resiliency, mindfulness and information for care teams.
Donations to support the organization may be made online. Funds raised will benefit research, support necessary programs, and foster social acceptance of Tourette.
Conference schedule
Mindfulness Activity
11:30am – 12pm EST
Why Should I Meditate?
That is a great question and I have four answers.
- Mindfulness Meditation can help you to focus.
- Mindfulness Meditation can help you to manage your emotions.
- Mindfulness Meditation can help you to remember stuff.
- Mindfulness Meditation can help you to become kinder and more compassionate.
And, in my 30 minute session, we’ll talk about and practice all of that.
I Can Statements (Active Learning Targets)
I can define Mindfulness Meditation.
I can engage in practices to support my focus, emotions, memory and compassion.
I can explain how to begin a Mindfulness Meditation practice (should I decide I want to).
Presented by: Erica Ebert
Resiliency and Depression Discussion and Activity
Building Resilience: Finding Strengths in the Struggles
12pm – 1pm EST
“Although the world is full of suffering, it is also full of the overcoming of it,” said Helen Keller. This presentation will briefly identify common psychosocial struggles of those living with tic disorders. The bulk of the presentation will outline how to build resilience and grow through life’s adversities.
Takeaways:
- Define resilience within psychological, relational, and cultural frameworks
- Identify key factors in the development of resilience and growth
- Overview ways to develop realistic optimism, social support, and flexible awareness
Presented by: Kenneth W. Phelps, Ph.D.
Vision Board Activity
Visualizing a Fantastic Future: Creating a Vision Board
1pm – 1:45pm EST
Bring along a photo or object with meaning to share with the virtual group!
A vision board is a special space that displays your goals, how you want to feel and your hopes for the future. By creating a vision board, you are making your goals visible. That way, you are able to access this important information about yourself every day, which is particularly important during this current pandemic, when you may be feeling more lost and overwhelmed than usual.
Presented by: Dr. Katrina Hermetet-Lindsay and Allen Shoaff, Tourette Association Ambassador
Self-Advocacy and Disclosure
Resiliency and Depression Discussion and Activity
Building Resilience: Finding Strengths in the Struggles
12pm – 1pm EST
“Although the world is full of suffering, it is also full of the overcoming of it,” said Helen Keller. This presentation will briefly identify common psychosocial struggles of those living with tic disorders. The bulk of the presentation will outline how to build resilience and grow through life’s adversities.
Takeaways:
- Define resilience within psychological, relational, and cultural frameworks
- Identify key factors in the development of resilience and growth
- Overview ways to develop realistic optimism, social support, and flexible awareness
Presented by: Kenneth W. Phelps, Ph.D.
Vision Board Activity
Visualizing a Fantastic Future: Creating a Vision Board
1pm – 1:45pm EST
Bring along a photo or object with meaning to share with the virtual group!
A vision board is a special space that displays your goals, how you want to feel and your hopes for the future. By creating a vision board, you are making your goals visible. That way, you are able to access this important information about yourself every day, which is particularly important during this current pandemic, when you may be feeling more lost and overwhelmed than usual.
Presented by: Dr. Katrina Hermetet-Lindsay and Allen Shoaff, Tourette Association Ambassador
OCD Panel
Coping with OCD during tough times
2pm – 3pm EST
This session will describe what OCD is, management strategies for decreasing its effect in daily life, and the intersection between tics and OCD. YA Andrew Fogarty and RL Bethany Deluca will talk about how they have disclosed their OCD to others, share their experiences with OCD, and describe management strategies for home and school.
Takeaways:
- Understanding OCD
- Understand ERP- what exposure and response prevention is and how it works
- Telling the difference between tics and OCD
- Understanding Tourettic OCD
- Participants will learn strategies on how to self-advocate and disclose their OCD
Presented by: Shannon Bennett, Ph.D., Heather Adams and Helene Walisever
Self-Advocacy and Disclosure
Awesomely, Painfully Vulnerable
3pm – 4pm EST
During this presentation, Ben will discuss how having conversations he’d avoided his entire life changed everything for him, and how you can do the same. Conversation isn’t a new concept by any means, but it’s wild how elusive it can be in any meaningful sense. Ben started Tourette’s Podcast to connect with other Touretters and discuss things he’d bottled up for so long, and in the process found a universe of people who could relate and help one another find entirely new ways of explaining their own conditions. For those who go there with good vulnerability, the effects ripple out into other aspects of life and create positives you probably didn’t think possible.
Takeaways:
- Stop seeing vulnerability as weakness; it’s like exercise, and you’ll see the benefits.
- Find new ways of relating to people who are completely different from you, and in turn help them understand where you’re coming from.
- How to balance powerful openness and honesty against the notion that you’re “just looking for attention” or “drama.”
Presented by: Ben Brown, Host of Tourettes Podcast
Navigating High School
4pm – 4:45pm EST
High school can be an intimidating, yet exciting time. Students may face many new changes including making new friends, becoming more independent, learning new subjects, and exploring new extracurricular activities. Sometimes, having TS can be an added challenge during high school. Students may be unsure about letting their classmates and teachers know they have Tourette Syndrome. Join Youth Ambassador Jordan Patterson and Rising Leader Hayley Pennigton as they talk about their experiences navigating high school and adjusting to their changing environments.
Takeaways:
- Managing TS and co-occurrences in high school
- Balancing academics and extracurricular activities
- Managing friendships and social situations
- Educating peers and teachers about TS
Presented by: Hayley Pennington, TAA Rising Leader and Jordan Patterson
Keynote Address + Burning Questions
5pm – 6pm EST
Shane Koch is the Teen Summit’s Keynote Speaker! Shane, a 16-year-old Tik Tok influencer, will share his journey with Tourette Syndrome. He will also discuss how his dog Callum, along with creating content for Tik Tok, has helped him manage tics and deal with TS.
After Shane’s address, join the TAA as we answer a series of burning questions submitted online by teens and young adults. Questions include:
- How do you deal with TS in school?
- What is the best advice you have ever been given about handling your Tourette as a kid/as a young adult?
- What was it like getting a driver’s license? Did the instructor have concerns or did you have to explain what tics were and why you had them?
The Teen Summit will be hosted on Zoom. Teens can register for the summit here. Attendees can attend the whole day or simply join the sessions that interest you.
*Please note that the Teen Summit is public and will be recorded. Youth under the age of 18 must have permission from a parent/guardian to participate.
About Tourette Syndrome and Tics
The involuntary utterance of obscene words is called coprolalia, and it’s much rarer than people think: Only 10 percent of people diagnosed with Tourette experience these symptoms.
There is no cure for Tourette. The cause also remains unknown, but it is thought to involve genetic, neurological and environmental factors that can be treated.
Tourette is underdiagnosed. Many children, parents, teachers and even physicians don’t fully understand TS, which can lead to bullying, a lack of community support, an improper diagnosis and a host of other issues that impair the quality of life for someone with TS.
About the Tourette Association of America
Founded in 1972, the TAA is dedicated to making life better for all individuals affected by Tourette and Tic Disorders. The premier nationwide organization serving this community, the Association works to raise awareness, advance research and provide on-going support. The TAA directs a network of 32 Chapters and support groups across the country. For more information on Tourette and Tic Disorders, call 1-888-4-TOURET and visit us at tourette.org, and on Facebook, Twitter, Instagram and YouTube.
Tourette Association of America | 42-40 Bell Boulevard, Suite 205, Bayside, NY 11361
