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Tourettes Syndrome

Kyle is nine years old  and is in the fifth grade. Four years ago we noticed what
we thought were allergies. He would squint and blink his eyes and would clear his throat. When he
started stretching his neck and shrugging his shoulders, we knew it wasn't allergies. I got on the
internet and started researching what could be causing these behaviors. The symptoms seemed to
get worse as a new school year started or if he was really nervous about something. We scheduled
Kyle to see a neurologist and he asked us what we thought it was. I told the doctor that from what I
had read, it sounded like Tourettes Syndrome to me. He confirmed our research and Kyle was
started on medication for his tics. During the exam, the doctor asked if there were any other cases
of Tourettes in mine or my husband's families and we said no. After going home I started to think
about it and yes, there were signs of Tourettes in my family. I guess as we were growing up,
Tourettes wasn't looked for and noticed like it is now.
 Kyle has always been full of energy! He runs instead of walk. He is always asking questions and
you can see the wheels in his mind working constantly! He was always a good student in his first
two years in school and then we started to see him struggling. He couldn't keep his mind on his
work, couldn't stay seated and couldn't retain what he had learned. If he read a story, he didn't
comprehend it. To do math facts, he could do them orally but, to figure them out on paper, he
couldn't. He can't remember simple math facts like 5+6 and always has to count on his fingers. He
is a very intelligent little boy and very good in sports but, he has to learn in a different way from you
and I. This fact frustrates him and has lowered his self esteem. He can't understand why he can't
learn the same as everyone else. We are trying to work with the school now to get modifications for
him. He can't handle being timed on his tests and his handwriting is suffers. He is taking Orap and
Tenex now to deal with the tics,rages and depression. These things help but, he is tired by the time
he gets home from school and we struggle to get his school work done.
Mason, who is eight, has started having tics since a bout with Strep throat this past winter. His tics
are mainly eye blinking. He says it feels like his eyes stick. He has  been officially diagnosed as we thought he would be.
He is also very hyper and has a very limited concentration level. We
had him tested for ADHD as this seems to run along with Tourettes Syndrome. Kyle has also been
diagnosed with ADHD and OCD(obsessive compulsive disorder).
 The hardest thing for our family has been to get the school to understand that our boys are not
doing these things on purpose. In children with TS, school work has to be modified and lots of times,
they need help remembering their school work. They are not lazy children. If they tell us they forgot
their homework, it is not an excuse, by the end of the day they can't remember what they have
done. These kids are frightened by the fact that it is not easy for them to remember things. I think
some of it comes from the frustration. They try hard to keep up and end up getting farther behind.
We are in the process of getting an IEP set up for Kyle so the modifications will be in his file.
Hopefully our school will follow what is in that file. Our teachers today are not educated enough
where special needs children are concerned. I am not saying this is their fault. With New York state
going to Regents standards, I don't believe the teachers are left with enough time to help our kids. If
the state keeps raising the standards for education, our "special children" will be the ones to suffer. I
have started taking training to become a "lay advocate" so I can go into the schools not only for my
boys but, for other children as well to try and make the system work for them the way it should. A
big problem is that the majority of parents don't realize what they or their children are entitled to.
Most schools won't volunteer the information either.
  To me, the internet has been a life saver in helping me to cope with all that has gone on. I have
met a wonderful and supportive group of parents whose children also have Tourettes Syndrome and
the other disorders that seem to follow it. These men and women are there when we need advice or
just need to vent. They are there when I need to talk because Kyle tells me, "Mom, you just don't
understand what it's like". No, I couldn't possibly know what it is like but, the other parents have
been through this and give advice on how to talk to him. If I had to do this alone, I don't know where I
would be right now. I thank God every day for leading me to this support list! Because of this list, I
have seen areas that need to be improved for all of our kids. Insurance is horrendous! Some of these
parents fight for the medication that will help their children make it through everyday. There is also a
great need as I said before to educate our educators! These people have our kids for the greater part
of a day and they need to be educated on how to deal with them. I am going to try to do my part to
help affect changes in the system. I won't be around forever and I want things to be made easier for
when I am not here for my children. After all, who will care when I am not around? I have made this
my main goal now and plan on going back to school to get my degree. At 44 years old I thought
maybe I was too old but, at 6 and 8, my boys are too young to have to feel the way they do! As my
Legislator said to me, do it! You can sit home at 44 and do nothing and you will still be doing nothing
at 45,46,47,.....! Sue, you are a smart lady and know how to get me going! Thanks!
  I thank you for reading our story and ask only one thing in return, the next time you see someone
that might have Tourettes, look on them with love and understanding! They didn't ask to be different
from everyone else and once you get to know them you will find a warm,loving and sensitive person!