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Zachary's Story

Feb 13, 2009

My name is Zachary Benayon and I would like to tell you a little bit about myself and how the Tourette Syndrome Foundation has helped me and my family.

I am 12 years old. When I was young, my parents took me to doctors because I was a nervous child and I had fears. For example, I was afraid of heights and escalators. I also needed things to be in a certain order, for example, before I went to bed at night, my room needed to be in a certain way or I could not fall asleep. My parents called these rituals. I also needed special help at school because I had difficulty concentrating and learning new things. I was taking all different medications that did not help me.

It does take me longer to learn, but eventually I do learn and get good at things. I know how to ride a two-wheeler, I am a good swimmer and skater, and I play the piano, but it always takes me longer to learn than most kids like my younger sister and brother.

I also developed what I used to call habits but now I know them as tics. My tics happen to me when I don’t expect it. Then they go away, and I’m ok for a while, and then, I get new tics. My tics make me feel bad and drive me crazy. My family did not know what I had and it drove them crazy. I felt like I was not a normal kid.

When I was 7, I went to see Dr. Sandor who diagnosed my condition as Tourette Syndrome (TS). Dr. Sandor asked my family to contact the Tourette Syndrome Foundation because they had a lot of information that would help us. You see the most difficult part for me and my family were not the tics but everything else that went with it like my fears, my nervousness, my rituals, my slow learning, and my behaviour. What was also very hard for me was that kids at my school did not understand what I had until I was in grade 3, when I had the most amazing teacher who asked me to speak to my class about my TS. The Tourette Syndrome Foundation helped me and my dad learn about TS and how to explain it to my teachers, my classmates, my friends, and, most importantly my family. This made all the difference to me because people around me began to realize what TS is about and that I was a good kid who couldn’t help what I was doing.

I am on a very small amount of medication now and it is helping. Everyday my family and I are learning new ways to deal with my situation and it is frustrating many times. I know that I may have TS for the rest of my life and I wanted to share a little bit of my story with you so that you realize how important it is for kids like me to have people understand what my family and I go through everyday. The Tourette Syndrome Foundation has helped me and my family very much to understand my TS. Thank you to my family for putting up with me, I love you very much, and thank you all for supporting kids like me who have TS.


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