Our story about John

    Our son, John (left) was diagnosised with Tourette Syndrome (TS) in 1996, when he was only 6 years old.  John was your normal, average, day to day child who played with his match box cars and tried to do the things he was not old enough to do, like mow the grass or help his dad build a chicken coop.  
        While the school year was ending, John was changing in a different way then most the boys his age.  He would jerk his head from side to side (like some of us do to get the hair out of our eyes), he would blink his eyes rapidly or clear his throat repeatedly.   
      Although we saw this, we did not think there was a problem.  But his teacher saw something that we did not, it was affecting his school work and his classmates.  They were not able to concentrate on their work as John was doing things that would draw their attention  away from it.  That is what prompted the phone call from this supportive teacher.  She said that John had been doing the same things at school that we had noticed but decided to ignore.  
     After scheduling an appointment with our family doctor and finding out that he did not specialize in this condition, we were referred to a child neurologist.  The doctor was nice (as nice as he could be) and some what explained that John had Tourette Syndrome.  Denial came over us, we refused to check this out.  We knew that our son was perfect and that people were making a mountain out of a mole hill.  So we stood back and let John continue to do what he had been doing....having tics.  Even though a mild medication was prescribed and he did improve, we still thought these people were nuts.  Our boy was fine, there is noting wrong with him.

     Yeah, that is what all of us think at one point or another.  But we were wrong.  John did improve but that was due to the medication.  When he had growth spurts, his tics returned only with a new one added each time, like shrugging of the shoulders, snorting and even arm twitches.  That is when we thought, "Hey, maybe just maybe these people are right." and we checked the web for more information.

     Since then we have learned alot of interesting information and have met wonderful people who are in the same situation that we are.  At first we thought  "Oh my gosh, not our son!!" but after reading letters from our friends at sunrise-tourette@igc.topica.com  we found out that we are not alone.  But the best part is, TS people are not dieing, they are not contagious and they are not weird.  They are people too, just like you and me.

     We wanted to do something for John to show him that we love him.  No matter what mountain we have to climb or what hill we will have to move we will be right beside him every step of the way.  But there are people out there like you and me with frustrations, concerns and similar problems with TS or parents of TS patients who are still afraid to come forward.  I remember that day just like it were yesterday and if I would have had  a safe haven to go and learn the information then, maybe I would not have been in denial as long as I was and maybe John would have recieved the help he so deperately cried out for and we just did not hear him. 

     Hopefully this site will help those who are less computer knowledgeable and/or afraid to ask for help as we once were.  If you find something that should be added to this site or any input, please email me and I will try to do my best to keep you informed on all the changes in our precious TS kids.
Thank you,
Rob and Dorene Carse
Carsed3@curets.com

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