It is hard to believe that it has been 6 years since I was diagnosised with Tourette’s Syndrome. I know when I was first diagnosised in 2003 it seemed like time just stopped. I was in the 4th grade, and my family had recently moved from Las Vegas, to Columbus, Ohio for my dad’s job. My mom told me that she knew that the transition would be difficult because change was always hard for me when I was little. I really liked my routines, and wanted things to be just so. I had a hard time adjusting to our new home. Even after a year of being there, I hated school. I hated going, and it was even worse when I came home. I would throw big “tantrums” and completely lose it almost as soon as I would get home. I was usually in some fight on the bus coming home, it didn’t help that it was a 45 minute bus ride. My mom just decided to come and pick me up from school because it was easier and faster. This helped for a little bit, but then I would get into the van and completely lose it before I would get home. We look at that experience now and realize that it was my anxiety, and worries coming out. It was holding my tics in all day so no one would notice, and then coming home and letting everything HANG OUT- because that was the place I felt most safe. I think the hardest part for my parents was constantly being blamed for doing everything wrong at home. When my parents would talk to the teachers they would tell them everything was perfect at school no problems, and so then they would look at us as if we were doing something wrong at home.
My teacher I had in third grade was wonderful to me and I really enjoyed her a lot. We will call her Mrs. P. I liked her so much that when she decided to teach 4th 
grade, I told my parents I wanted to move up with her. We thought it would be a good idea so then I would not have to go through the change again, which we all know I don’t like very well. Mrs. P, was wonderful starting 4th grade right up until my mom shared with her her concerns about my behavior at home, and trying to figure out what was going on at school. Things turned ugly when my mom shared her concerns and told her we were going to see a therapist to make sure everything was okay, and try to work things out. Then Mrs. P, decided that I was a behavior problem all the time.
After learning of my Tourette’s Syndrome, my parents decided to wait a bit to tell the school since we were starting to have problems and to make sure they “had their ducks in a row”. Everything came crashing down though, as friend by friend I was excluded from play groups, at school. I would get put in “time out” or in the corner aways from everyone for making funny noises and disrupting class. Then there was the day we had a really big Math test, and I was so very nervous. (nerves and tics aren’t good together) I was having a hard time keeping my grunting noises quiet. During the test, the more nervous I got the louder my tics were. Darn it, I couldn’t keep them in any more. I was trying so hard, and got really distracted, you can guess I got a D on my test because I was so worried about everyone looking at me because of my noises. My teacher got mad at me for disturbing everyone, and so I had to move my desk in the corner again away from everyone because I wouldn’t admit that I was doing it on purpose. You won’t guess what else happened, my neighbor and really good friend I was sitting next too quit talking to me or coming over to play after that. She wouldn’t even speak to me at school because she got a C on that Math test. Mrs. P called my parents to tell them what a disturbance I was and how I (personally) caused her “A” student to get a “C” with all my antics. (she forgot to mention that she had already put me in the corner for it) My parents decided they needed to go and talk with my friend ”Jessie’s” parents and explain what happened. They hadn’t told anyone yet about my diagnosis, but decided to talk to our neighbors anyway. They thought for sure they would be understanding to what happened since they were teachers, and surely because Jessie and I had been friends since we moved to Ohio, 2nd Grade to be exact. Well, you can’t count of the obvious results some times. Jessie’s parents were really mad about the Math test. My parents pointed out I did poorly too. Maybe the kids just didn’t understand the material. My mom and dad told them that I had been having a rough time, and had recently been diagnosised with Tourette’s Syndrome, and that the noises weren’t on purpose they were tics. The tics happen when I get nervous. They also told them they hadn’t shared that information with the school yet and that Mrs. P didn’t know about it just yet. They just wanted to come and make sure as neighbors that our apology was extended, and they knew how upset I was that Jessie was mad at him. Of course they said they were okay with it, to my parents, but you know, they would never speak to them or me again after that. I never did understand why for a really long time. How can you when you are 9 and thinking your best friend would understand. Her parents didn’t tell Jessie I had Tourette’s Syndrome or what it was about. Her parents told her, that I had Psychological Issues, and to stay away from me because I was a bad influence, and made her get bad grades.
In my really long story about my experience in Columbus, I had so many questions about why people were the way they were. I would ask my mom all the time why my teacher didn’t like me anymore. (that is when she found out I had to move my desk away from everyone to sit in the corner.) Then came the meeting with our awesome neuro-psychologist, Dr. Steven Guy and the staff at school, everyone that is except Mrs. P. She didn’t show up that day for the meeting even though she told my parents she would be there. This was suppose to be the day that we officially announced to everyone that I had Tourette’s Syndrome, and we brought in the expert to explain what it is and how I needed some extra help in school with certain things. This was also the meeting where my parents found out that Mrs. P. This is also the meeting where the principal told us in 40 years of teaching he had NEVER had a student with Tourette’s Syndrome and he thought my mom and dad were making this up to get extra stuff for me, and to make excuses. My mom told me later she didn’t think Principal L was a very bright man. He also told her he would help her stick the “For Sale” sign in our yard if it would help us leave the school district. ( I promise this story is for real)
Well, when push came to shove, and my parents started shoving to get the right things in place to help me, and also make Mrs. P be accountable for her actions. I got shoved right out the door of Mrs. P’s class. She told everyone in a meeting with the superintendent of the school, that she didn’t want me in her class anymore. I wasn’t and “A” student anymore, and I was causing too many distractions from her other students that were “A”students. She accidently said that she had just been letting me draw pictures and sit in the corner doing nothing, so she didn’t have to deal with me. I got moved into another class for the rest of the year. It was alright, hard to change, but good to be away from the kids who called me names in the lunch room, and told me I had “Psychological issues” because Mrs. P said so. Instead I got to hang out with the other kids who got labeled just like me, as trouble makers, and problems. That was okay with me for the time being. It meant that I was no longer the focus of attention, and there were kids that were a lot worse off than I was. It was the next week that my parents put the “FOR SALE” sign in their own yard, and decided enough was enough, it was time to move on, and we did.
Now that I am older and we can look back, at what I went through in the beginning of my diagnosis, I realized how important it is to be honest, and have integrity, especially when you are working. My Mom told me, the saddest part of that experience for her was the reality of an opportunity lost. It was Mrs. P’s opportunity to make a difference in a little boys life when he needed her the most. All I needed was to be loved, and understood. I remember asking why Mrs. P didn’t like me anymore. I still cared about her a lot, and after I left her class, she wouldn’t even say “Hi” to me any more. She had me for a student for 2 years, and she missed an opportunity of a life time.
As an Youth Ambassador for Tourette’s Association, I have an opportunity of a life time. I get to make a difference in the lives of other kids, who may be like my friend Jessie was, too scared to ask questions, and not having enough courage to stand up and tell other kids not to tease me. I get the opportunity to help other kids understand what it is like to have Tourette’s Syndrome. I get to help teachers understand how they can make a difference at a critical point in a kids life. You get a chance to make a choice, and either way you choose there is a consequence, good or bad. This is my chance to make a difference and help other people change.
Here are some fun facts about me- I have gotten a 4.0 so far this year as a freshman in High School. I am working on my getting my Eagle Scout award by the end of 2010. I ran Cross Country for Milford High School this past year. I was chosen for the District 14 Honors Choir, and performed with them in December. I really love Music, and the best part is I don’t tic very much when I am singing, running, or swimming. Even better, my teachers at Milford High School, are excited to have me in class, and I don’t have to sit in the corner by myself because I have Tourette’s Syndrome. My friends know and like me just the way I am, tics and all. So it is true, you learn from the past, and the future is always brighter. I am glad life isn’t based on the things that happened in 4th Grade.
