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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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