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Few of my experiences with TS

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  • Few of my experiences with TS

    I wanted to share some of my experiences with TS. This is for anyone, parents with kids who had TS, people who have TS themself or people that dont know much about it but want to learn. But before i begin i just want to say 1 thing. I have a learning disorder its kinda bad so if things are mis spelled or dont make sense im sorry ill try my best, Ok here i go.

    People who have TS have all different experiences so they may or may not be able to relate to what im talkin about. Just because 1 person goes threw it doesnt mean all will

    I was diagnosed with TS when i was 7. Much before there i had the symptoms. My mom didnt know why i was doing it as she has never heard of TS before this. To her i was just doing it for attention until she realized i really couldnt control it. My very first tics were eye blinking and shaking my head a lot. When i forst went to the Dr. my tics were pretty bad I was put on medicine right away. I was on Clonidine (not sure if i spelt that right)

    After first hearing that i had TS i was kind of relieved in a way because i knew that what i was doing i really couldnt control and that there was a reason for it. At first i thought ok well i have a problem no big deal, until they really started coming out. At 7 yrs old i didnt know how to hide them.

    As time passed my tics were still bad and i was getting more, more noticable ones more annoying ones. School was my biggest problem, nobody understood it, i got made fun of everyday. I tried explaining it but nobody would listen. When i went home i thought i was safe but i wasnt. My older brother and sister would make fun of it to. It was begging to get to much for me. I was trying to cope with have the TS and also the passing of my grandma when i was 7 whom i lived with so we were close.

    I started therapy. I went to the Tourettes Syndrome Association in Ny. I loved my theripist, after the long har days at school i enjoyed going there for a laugh. She helped me to deal with the teasing at school and home. I was also in a group with other kids but that was short my anxiety got 2 bad and i couldnt be around them anymore, so i went back to just 1 on 1. Also when i was bout 7-8 1 of them, i was going to be on tv. I forgot the talk show name, sally jessica... something else i forgot. She was doing a show on Tourettes, the last minute i backed out because i couldnt go on tv with so many people watching.

    Once bein in therapy and learning how to deal with having TS i started making friends, not many just a few. I was in a private school and i enjoyed it there. Until 4th grade, in 4th grade i had to leave there and go to a public school. I was held back in 3rd grade because of my learning disorder and the school did not give me any extra help and i was failing again because of it. So i had to trasfer which upset me, because the school i was finally making friends in i had to leave because i was "stupid" as i seen myself then. Public school helped me out a lot more though, took time but i made new friends. And i got a lot of extra help.

    Another problem i had which my Dr. thought was linked to the TS was sleepwalking. At first i'd just walk around house, then i started making phone calls in the middle of the night screaming out windows, and walking into the middle of the street at nite. My mom finally had to get high chain locks to keep me in the house. Although according to what she said i had a good time at nite lol

    For about 4 years from about 8-12 yrs old i went to a summer camp. It was a sleep away camp for kids with different needs. No one else there had TS but they had all different things. I enjoyed that camp i made some good friends and it was a lot of fun. I won the polar bear award 1 year.. Getting up every morning at 6 am and swimming laps in the pool-out door pool- in like 50 degree weather :Big Grin: Anyway. I reached the end. It was for kids up to 12 years old, so that was kinda upsetting.

    As i got older i learned to hide my tics better around people but it was hard. But i felt it was what i had to do. Walking in the streets, rideing on the bus, i couldnt take people stareing at me. Now being 20 yrs old. i Know much more about TS and how to handle it with people, i know how to hide them if i need to, and tell people to shut up if i need to :Big Grin:

    My tics over the years have gotten good then bad. I have currently been off my meds since i was 14 although now i must go back on them because there bad once again. My tics moved from just eye blinking and head shaking to, eye blinking head shaking, neck jerking, stomach cleanching, strething my jaw, twitching my nose, and making weird noises. Many of them cause physical pains.

    The difference between now and then is that i know more about TS know and i know how to deal with it. It stil gets me down sometimes but i kno how to handle it. Bein a kid with TS i felt alone, different, felt like no one understood me. I've had many postive and negative effects of having TS and still today day by day i learn more.

    Tips for parents of kids with TS.

    I cant say i know first hand what its like to have a child with TS but i know what its like to be a child with TS and for the parents out there all i can say is to be there for your child. One cannot fully understand TS without having it. But the best thing to do is get the childs mind off of it anyway you can. Also groups are very good, they will see there not alone, and if they have few friends they will always know they have a friend out there just like them no matter what. Communicate talk with them, thats 1 of the things my mom never did with me, i wanted to much to sit and talk with her about how i was feeling but she never did. Get them involved get them a good hobby, my favorite hobby is writing. But there peantly out there. Just dont make them feel like there going threw this alone.

    I hope i didnt bore anyone, and if not thanks or reading. I may have missed some stuff but i will update it if i find that i did. Its 2:30 am so im kinda out of it lol.

    Take Care Everyone

    Last edited by PoeticMind; June 6, 2007, 03:31 AM.

  • #2
    Re: Few of my experiences with TS

    Thank you so much for your story Jessica! I really enjoyed reading it. I am sure there are many others here who have had similiar experiences. It is also helpful to parents to get an inside view as to how their child may be feeling about their TS.


    • #3
      Re: Few of my experiences with TS

      Loved the story. Jessica.


      • #4
        Re: Few of my experiences with TS

        Thanks for sharing your experiences, Jessica.

        As a parent it is really helpful to hear 'the other side' of the story.

        Thanks so much!
        Forum Moderator


        • #5
          Re: Few of my experiences with TS

          Thank you so much Jessica for sharing your story!!!! It didn't bore me at all!!! It was very informative and I enjoyed it. You are an inspiration to all of us.