• On Sunday, April 6, 2014, TSA-NYHV held an afternoon workshop with 50 participants on the topic of TS and Self-Advocacy. Children, teens, parents and grandparents learned from eight of the The Chapter’s Youth Ambassadors–Julia Gottlieb, Benjamin Tamarin, Jack Klion, Camerin Figueroa, Josh Wachtenheim, Matthew Eskenazi, Kevin Fink and Matthew Sheeley–who showcased the peer training they offer to schools. These YAs also discussed personal strategies they’ve developed to negotiate life with TS in their schools and communities. Some of the strategies these teens shared included:
  • educating yourself about TS and co-conditions helps you to understand yourself;
  • learning about different treatment options that may be available to help control symptoms including such things as CBIT, Competing Responses, Medications, etc., is useful but it is also important to recognize that what works for one person with TS may or may not work for another person with TS;
  • realizing that even though you have TS in lots of ways you are just like any other kid;

  understanding that there are different ways of dealing with a bully depending upon your age and the situation;

• letting your close friends know that you have TS without making it a big deal;
• being aware of the types of learning accommodations that are available to you and recognizing which ones you find helpful and which one’s you don’t;
• providing a packet of information to teachers and administrators before the beginning of each school year (include a photo, a description of  your strengths and weaknesses and the ways you learn best, a DVD about TS, and a candy bar);
• carrying a letter in your binder at all times that you have it available to explain TS to substitute teachers;
• attending IEP, 504, or teacher team meetings along with your parent;
• not being afraid to email all your teachers to let them know if you are having a tic exacerbation or need extra help or an accommodation;
• understanding that educating your teachers and advocating for yourself is something that doesn’t stop– you will have to do every single year and as situations come up throughout the school year–knowing that that you will need to employ self- advocacy skills in school and in life;
• enlisting the help of others to educate people in your school and community about TS (and knowing that it is completely up to you whether or not you want to even attend much less participate in a presentation about TS that occurs in your own school)
• using your voice to stand up for other kids with TS is empowering
• laughing is good. Using humor can be helpful when you are explaining TS–there are funny moments in the YA Presentation. You want people to be able to laugh with you not at you;
• tapping into empathy is a powerful tool for educating people – the TS simulation exercise really helps people “get” how difficult it can be to have TS;
• recognizing that you don’t have to “feel like you are the only kid in the world with TS” is really important;
• participating in activities such as the TSA-NYHV Boys’ Group, Girls’ Group and Teen Group Activities, TSA-NYHV Buddy Program, the TSA Youth Ambassador Program, TSA Annual Lobbying Day On the Hill in Washington D.C., Team TSA Events, and the TSA Bi-Annual National Conference helps you realize that you are not alone.  These are places where you will feel automatically accepted – you can relax and be yourself without having to explain yourself.

Toward the end of the afternoon our Youth Ambassadors were joined by a Parent Panel. Experienced educators/advocates/mothers  Helene Walisever, Laura Preskin, and Ester Sharpe responded to audience questions and shared strategies for fostering self-advocacy skills in kids with TS at every stage of development.  They urged parents to “start early” so that by the time our kids with TS are ready to “leave the nest” they will be equipped to advocate for themselves in the world of college and beyond.