• On November 4, 2014 , TSA-NYHV YAs were invited back to George Fischer Middle School in Carmel, NY where they presented to a total audience of 710 people! Matt Eskenazi and Ben Tamarin presented to the sixth grade, with Matt Connolly assisting with the Q&A. Kevin Fink and Matt Sheeley presented to the 7th grade with Matt Connolly and Ben Tamarin assisting with the Q&A.
• On Friday  November 14, 2014,  YAs Julia Gottlieb, Kevin Fink and Kaylee Chin  presented to 150 fifth graders at Springhurst Elementary School in Dobbs Ferry, NY.
• YA Matthew Eskenazi and new YA-in-Training Nick Szymanski presented to the Upper School (approximately 125 students) at The Eagle Hill School in Greenwich, CT on Friday January 16, 2015. Both Matthew and Nick are students at Eagle Hill.
• YA Julia Gottlieb will be joining forces with Helene Walisever in a presentation for a Parents as Partners Group (this group includes general ed and special ed parents and some staff) in the Carmel NY school district on January 29, 2015 to help demystify and destigmatize TS in this school district. YA Matt Eskenazi, and YAs-in-Training Olivia and Gabriella Roman will observe and assist with the Q&A so that they can become familiar with this type of joint presentation..

Dr. Calvin Hargis, host of the WTBQ radio show “Health Matters” interviewed tsa-nyhv Youth Ambassador Camerin Figueroa, along with Orange County TSsupport group co-leaders Jocelyn Figueroa and Natasha Tomlins of the Orange County Mental Health Agency. They had a roundtable discussion about Tourette Syndrome, and educated listeners in the NY and NJ area about what TS is and available treatments. Camerin also discussed his experience of living with TS and his role as a Youth Ambassador. This was the 7th year that “Health Matters” featured the topic of Tourette Syndrome.

Listen to the episode here.

1.  Normalize the anxiety.

• Telling your child that going to camp is “nothing to worry about” can actually increase their stress. Let your child know that you understand and sympathize with their fears by normalizing their anxiety.  Instead, tell your child it’s completely normal and understandable to be anxious in a new situation, and that most children feel the same way.

2.  Manage your own anxiety. 

• Parents can be even more anxious than their child is about the transition to camp.  Children are incredibly perceptive and very attuned to their parents’ emotions.  You want to impart to your child your confidence in their ability to manage this summer camp experience.  Focus on your child’s strengths and remind them of those positive qualities to help boost their self-esteem.

3.  Reduce the uncertainty.

• If your child is able to verbalize the source of their anxiety, help them make a plan.  Children can often spend a great deal of time wondering, “What if…What if I get sick?  What if I am homesick?” Walking through possible challenges and identifying steps for your child to take can be a great source of comfort.

4. Speak to camp personnel.

• While some parents are often hesitant to share concerns about their child’s anxiety and/or tics, informing camp personnel can be incredibly helpful. The more informed the staff is about your child, the better equipped they will be to provide individualized, appropriate support to help ease their transition and help maximize your child’s summer experience.

5.  Go through “rehearsals.”

• If your child is going to day camp, taking a walk through the new environment a few days before camp begins will often help your child feel better prepared to manage their first day.  Local camps are usually amenable to working with families of anxious campers to do whatever is necessary to help a child feel more comfortable, including letting families come by for a “dry run.” If your child is anxious about going to sleep away camp, speak with the Camp Director to see if you can connect your child with a specific “go-to person” prior to their departure. Children are often fearful of separating from their parents and/or caregiver, and a familiar adult in a new surrounding can greatly help reduce anxiety.  Being homesick is perfectly normal for children as they adjust to life away from home, and should be expected, especially in anxious children.  Helping your child develop coping strategies, including seeking the help of a comforting adult if they are feeling sad, can help empower them.

6.  Keep the goodbyes short!

• Saying goodbye to your child on their first day of camp can be very stressful for children and their parents.  Make sure not to arrive at the bus stop too early as the waiting can often increase anxiety.  Try and keep the goodbye quick and expect that there may be tears.  Crying is perfectly normal when children separate and embark on a new adventure, and is not a sign that your child will not be a successful camper.

Lastly, remember that summer camp is an opportunity for your child to develop a strong sense of self and a newfound independence.  The adjustment to a new environment may take some time for anxious children, but the positive changes and growth that you can see in your child at the end of the summer can be extraordinary.

Jill Conway is a Licensed Clinical Social Worker who has been working with children, adolescents and families for the past seven years.  She specializes in treating children and adolescents struggling with anxiety, OCD and Tourette Syndrome and is trained in both CBiT (Comprehensive Behavioral Intervention for Tics) and Cognitive Behavioral Therapy (CBT). For more information about CBiT and her private practice located in Rye, NY, you can contact her at jconwaylcsw@gmail.com, (914) 714-1969

CBIT uses Habit Reversal Training and incorporates procedures to diminish the influences of daily life that worsen tics.  The therapist works with the individual, and in the case of children, works with the parents, too, to evaluate daily life and identify changes at home and in school that need to be made.  Different relaxation techniques are taught.

CBIT training for professionals teaches them a specific protocol to follow in evaluating and treating patients. Patients can expect to see the therapist an average of 8-10 sessions depending on the severity and number of tics to be treated.

Linda Walter, LCSW is a Psychotherapist who has been in Private Practice for over 25 years.  She has appeared on national radio shows and writes for and is considered an expert by Psychology Today.  She is trained in CBIT.  Her practice is in White Plains, NY. For more information about CBIT and her practice, contact her at: lwalter@lindawaltercounseling.com, 914-282-7123, www.lindawaltercounseling.com

On Sunday May 4th, several girls from the chapter gathered for a Kids ‘R’ Cookin’ party hosted at the home of Wendy Gottlieb, parent of Youth Ambassador Julia Gottlieb. The girls made gnocchi and a mini-cheesecake dessert. Then the girls feasted on the delicious meal that they created and enjoyed each other’s company.

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• 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.

Chapter members Patty Anker, Helene Walisever, and Wendy Gottlieb met author Josh Hanagarne at the Westchester Library Association fundraiser luncheon last month. The author entertained a rapt audience with his humor and poignant stories of growing up as a Mormon with severe TS, and how competitive weightlifting and more surprisingly, working as a librarian in the “quiet” library environment, have helped him manage his Tourette Syndrome.