Tourette
Syndrome Life Stories
Story No.'s 33-38
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Stories
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Story
No. 33
Being
Properly Diagnosed Doesn't Necessarily Mean Life
Will Be Easier
I am a 27 yr old
nurse who was FINALLY diagnosed with TS at the
age of 22!
When I was approx 10 yrs old I began doing
"weird" things". I began
swearing
uncontrollably alone with repeating things I
would do over and over again. My parents
would become so upset because they thought I was
being an obnoxious kid. Little did they
know! I spent years being teased due to
various tics I had, unfortunately they were all
embarrassing.
Other children
did not understand and because they didn't
understand their way of
"dealing" with me was to call
names. As I grew older, my tics
became more severe. I began to think
I was going CRAZY! I finally got over my
embarrassment and went to see a
Neurologist. The first thing I told her
was, "Either tell me I have Tourette's
Syndrome or tell me I'm NUTS, but you'd better
tell me something!".
Finally after
years of horrible embarrassment and being
annoyed on my own part I was diagnosed
with having Tourette's Syndrome. Even
though I have my diagnosis it still is not
easy. People tend to still stare and make
comments to this day. I have been on
several medications for my TS, but nothing has
worked. Finally I realized that people
would and should love me or me or move
along. I think it is important for all
family members and people with TS to know that
even though we are different, we still require
the same love and respect as anyone else! :)
Thank you for your time :)
Jeannine
Story
No. 34
Grieving
the Loss of the "Perfect Child"
We noticed that
something was different with our son from the
age of 4. He had a depth perception
problem. He had trouble holding on to a
glass, walking from a rug floor, to a hardwood
floor, etc. Our other children did not have
these problems. Of course, we thought,
"Different child, different developmental
stage". Then he started blinking all
the time. I had heard about TS and watched
shows about the subject, but of course I thought
"Not my child. Could not happen to
us". Our son then started rolling his
eyes up so only the whites showed, he sniffed
continually, shoulder shrugging replaced the
blinking, kicking out of legs replaced shoulder
shrugging. Throat clicking replaced sniffing.
Body jerks began. I knew what he had, but
I still thought I was a paranoid mother.
At age 7, I took our son to his Pediatrician.
I asked for Zack to have a complete physical,
not telling the Doctor what I was really there
for. After 10 minutes, the Doctor turned
to me and said "Your here for TS aren't
you". I started crying. "Yes" I
replied. An appointment was arranged for
Zack to see a Psychiatrist who runs a TS
Clinic. He was diagnosed with TS, RAGE and
probable OCD. I had never heard of
RAGE. After the explanation by the Doctor,
I realized that he was describing Zack to a
tee. The violent tantrums. The fact that
when Zack as a RAGE, I look into his eyes and
honestly do not see my child. It's like a Jekyl
and Hyde. Within 10 minutes of the tantrum, he
turns into Zack again.
The TS, a piece of cake, the OCD, no problem,
the RAGE, very hard on all of us. It's hard when
you tell your son "I love you" and he
throws a plate across the room because he was
disturbed when he didn't want to be. It's harder
to have him come to you after the time out,
crying and apologizing and saying that he tries
to stop, but he can't. He knows it's
wrong, but he can't stop. "Mom, do
you still love me?"
After grieving for the loss of that
"perfect child" that all parents want,
you begin to realize that you have a
"special child". Still perfect, but in
their own different way. My fear now is
how can we help those in contact with him
understand what RAGE is? Zack can have a
full, wonderful life, if given the chance.
But will society let him?
Story
No. 35
A
Mom's Battle for Education
My story is not a
nice story. In fact, when I try to tell someone
about my story it seems like it surely can't be
real. I guess it starts back in 1990 when I
received the news that my son probably had
something called Tourette syndrome. I knew a
little about these words because like most
people, I watched a program called LA Law. This
episode was about someone having TS and a law
issue. The person on this show had the language
thing and was fired from their job.
In my part of the United States there was little
to know about TS. OCD was just entering with the
idea that it was linked with TS. Two days before
this diagnosis I was on my daily walk talking to
God as usual and I told him I wanted a closer
union with my husband and children. When I
received the news I thought this must be my
answer from God, and since it must be His will
everything was going to be all right.
In the present
time, 1999, I still believe God does not make
any mistakes but the road I have traveled on has
been too hard. I wonder if I took a wrong turn
and landed out in left field somewhere without
God.
Some people have
said I am a pioneer, a ground breaker. If I am,
it has costs me my son and the happiness of my
family. Parents that have children with more
severe TS will have problems with the education
of their child. I trusted the local school where
my son went to know how to educate him. I did
not realize what this would mean to my son. The
school worked with him at first but when the
behaviors would not go away they changed their
tactic. They began the good ole' behavior
modification routine. I did not know any better
so I allowed this to
happen, and of course it did not work. I also
did not know anything about special education,
but the school did.
In 1991, the school told me I had to send my son
to a psychiatric hospital for an evaluation.
This was the first lie. There were many more for
the next three or four years. During these years
my son failed in academics and social skills. He
had to earn the privilege of having school all
day. He had to earn the right to have recess and
lunch with his peers. They expected him to do
this without help and needless to say he was not
able to accomplish this. We lived in a small
town and my son became an outcast. I kept
reading all I could find on this disorder and
special education law called IDEA. About the
middle of fifth grade I said this is
enough and with the help of a doctor, got my son
placed in homebound.
This was great. I did not know why at the time,
but it sure was working. The only problem was
the school supplied a teacher for one hour a
day. I did not know what to do the rest of the
day with him. I asked for more hours but they
were denied. For this one hour I watched my son
learn. I watched while this wonderful teacher
made magic and witnessed my son wanting to
learn. Now the academics were coming along even
if it was at a snails pace. Unfortunately,
social skills were not being addressed.
I brought this up to the special-ed director and
the answer was a special school for "kids
like my son". I was duped once more and
allowed my him to be placed 20 miles away from
home in a special school made just for him. I
did not realize it was based on behavior mod
just like before. Sixth and one half of seventh
grade my son was in the worst nightmare I could
ever imagine. He was with very bad behavior
disordered youth of all ages. His behavior until
this school was TS and OCD and a bit manic, but
we did not know about this manic part yet. I
knew with all my heart I had to get my son out
of this school but did not know how. My husband
mortgaged our home to have the money to retain
an attorney. There was a change of special
education directors at this time. This next
person we had to deal with, I am sure, is the
seed of Satan.
1996 to 1999 have been very interesting but
painful. Untrained school staff, an attorney who
made a big mistake, and my OCD of not getting
out and forgetting the education of my son has
lead us to the place we are now. I could have
stopped but I did not know how. We ended up
being sued by this school district. We lost
everything we had plus $30,000 dollars. I
learned special-ed law the hard way but I indeed
did learn it. I now advocate for special needs
children in IEP meetings and teach parents how
to use IDEA so they can have their child's
"unique needs" met. It is like a game
of poker. You bluff a little, you learn when to
call their hand etc. The stakes are high because
if you loose, your child looses.
My son was abused
by a teacher but he ended up in handcuffs and
arrested. The district had him in complete
isolation. I later proved through child
complaints to my state that there was no
behavior plan. This is a major mistake against
the school. There was no way I could do anything
about it. This was very hard for me to watch, as
my son was abused and neglected by a school
system and I was not be able to help him.
We appealed the civil suit and won in 1998. It
was to late for us because of all the gossip
going through the school. I know this was
happening because I was a school bus driver. I
heard things and some more bold people said
things I could hear. We had to leave our
hometown of 25 years.
My son is 17 now and a high school dropout. The
new school district was given the bad records of
my son and felt like they needed to continue on
with the wrong placement. My son could not make
it inside the school building in our hometown
because of all the town gossip. Hew was placed
in homebound again. Well! once more we made
academic gain. I finally realized if my son was
going to get an education he had to have
one-on-one teaching in a room with little in
there to distract him. Then the perfect solution
would have been interaction with non disabled in
nonacademic. This low stress level would have
been good for him to learn from his non disabled
peers. This would have helped his social skills.
This was never going to happen. If I would have
known how to advocate for him in the beginning I
probably could have done this for him. He would
now have better social skills and possibly be
able to interact with others. instead he has a
completely isolated life.
On this date September 18, 1999,I am once again
in what is called a due process with this new
school district. I know more now and I have a
chance to win. If I can do this my son will be
able to receive homebound services again. I have
learned how to go from one hour of homebound to
25 hours. This is why the new district we are in
is fighting us on placement. They want to put my
son in their "one size fits all"
program. Guess what.....it's behavior
modification again.
I will end my story with the news that after I
got political in my hometown, the school
district was investigated by the state
department. They found the special-ed programs
deficient and were told to fix them. The
children with Tourette syndrome that might come
there in the future will have better treatment
and education. All other special needs children
will benefit also. The sad thing is there is no
way to make these people be responsible for the
things they were doing. I recently found notes
in my son school file where there was a plan to
have our son's custody taken away from us. He
was to be put somewhere in the
upper part of our state. This way his education
and the cost of it would not be the
schools responsibility. This shows how
much power a school district has. There were
times that I knew God covered us but I did not
know why. God fought for us when I did not even
know what was going on.
I don't have an end to my story. Life just goes
on. Tourette syndrome falls under Other Health
Impaired in special education, not BD. It makes
a difference how TS is treated. School staff
must be in-serviced by someone who is
knowledgeable about this disorder. A proper
behavior plan has to be incorporated into the
IEP. I hope to right some of the wrong that has
been done. Please pray for me as I advocate once
again.
Story
No. 36
Finding
Solace in Long Distance Running
I am a
24-year-old male living in Connecticut. In
the scheme of things, I suppose that I'm one of
the lucky ones among TS victims.
My Tourette's developed when I was in fifth or
sixth grade. Like so many of the stories
I've read here (I just discovered this site
recently), I found myself doing things like
repetitively counting to 24. I know it
sounds weird, but it's just what I did.
Around that age, my teachers and parents began
to notice me making throats clearing noises and
short, abrupt humming sounds. I guess they
thought it was just some dumb habit, so I was
always told to stop.
You all know the
rest of the story: of course I could stop for a
while, but it always came back worse than
before, so the teachers and parents figured I
was testing them. I'd get disciplined, and
eventually, as I lost my friends and my
teachers/parents lost confidence in me, I lost
confidence in myself and simply didn't care
about anything. My grades went down the
tube, I had no real friends (except for the kids
who were outcasts for their own reasons) and my
tics got steadily worse. In junior high
school, I developed a constant urge to bend over
and touch my right knee to my chin. This
resulted in lots of teasing, getting my books
pushed out of my hands, etc. I also
developed a mild "barking" sound
whenever someone angered me, which was often!
So the guidance counselors and school shrinks
and parents took me to psychologists, which
angered me further because that implied that I
was
mentally ill, and I knew I wasn't. I found
it quite insulting, also because I knew that I
was intelligent but I was unable to make the
grades to prove it.
Luckily, my parents learned of Tourette's from
some magazine article, and showed it to the
doctor, and very suddenly I found myself at a
neurologist's office, and I was diagnosed.
They started me on medicine -- I think it was
called Klonopin -- but I was too young to really
know or care exactly what it was. Still,
it was a relief to know what my affliction was,
because it proved that I did NOT need a shrink
and that I was not doing any of my tics on
purpose. The medicine helped a great deal;
some of my symptoms were still present but in
much lesser
quantities.
Toward the 11th
and 12th grades, I found solace on the track
team. Even if I never had Tourette's, I
would have been teased anyway for just being a
nerd and not athletic, but in distance running,
I stumbled on a sport that I was actually good
at, and I found it very, very relaxing.The
better runner I got to be, the better my grades
got. My social life improved, I had more
friends, and my tics began to vanish. The
doctors lessened my medicine dose, too.
In college, one day I happened to forget to take
my medicine, and I realized the next day that I
didn't have any tic bouts that day. So,
just to see, I didn't take my medicine the day
after that either, and I felt great because I
still had almost no tics. So I stopped
taking the medicine completely, and now, my tics
are just occasional, but more tolerable and
easier to deal with than ever
before.
Even though I've
slacked off running (now that I'm out of college
and in the far busier work force), I've found
new solaces, and I think that simple maturity
has helped me to deal with stress. Also,
for about three years and ending just recently,
I was in a serious relationship with a girl who
suffered from a learning disability. She's
one of the only people who ever really
understood me. We broke up recently, and
this fact, combined with an increase in my work
responsibilities, has made my tics worse
lately. I'm considering going back on
medication, so I decided to go online, figuring
that there must be newer and better medicines
than whatever I took 14 years ago. So, I
was doing research, and found this site.
One last comment -- I've only ever met a couple
other people in my life who also have Tourette's,
but I've seen the case studies, and I noticed
that almost everyone who has it seems to be
quite intelligent. Has anyone else noticed
this? I find it fascinating. I do
wish that Hollywood would take more care to
portray Tourette's' accurately; I'll never
forget the episode of "L.A. Law" where
there's a case involving a Tourette's victim who
gets fired from his job, and they make him out
to be some complete Zombie. It was years
ago, but it angers me just thinking about
it.
I cannot agree
with the multiple people who wrote here that
they are not upset that they have the disease --
I would not wish it on anyone. True, I
think I may have turned out to be a better
person because I went through having Tourette's'
as a child, but do I wish I didn't have
it? You bet. Also, maybe it has
something to do with the Internet generation
being younger, but I haven't seen many stories
from older people (say, 55 or above) and how
they deal with having Tourette's. I'd be
glad to field comments over e-mail.
Story
No. 37
Rising
Above Tourette Syndrome
by Bill Baxter
I have had
Tourette Syndrome all my life, almost since the
day I was born. During my Teenage Years, I was
often dumped on, made fun of, and abused by just
about everyone in my life. I was often told I
was useless, and couldn't do anything or amount
to anything. As it turns out, people with
Tourette Syndrome can accomplish anything they
put their minds to, and a lot of people with T.S.
have been known to live very productive
lives.
After awhile, I
began to ignore everyone else's put-downs, and
put my mind to accomplishing great things. My
advisers in high school said I could never
attend college. I not only attended college, I
graduated from California State University at
Hayward in 1979. Since then, I have become a
co-author of three children's activity books
entitled Old Testament Bible Puzzles, New
Testament Bible Puzzles, and Life of Jesus Bible
Puzzles. I also have had ten years of
professional Voice Lessons off and on. I
performed with The Orange County (California)
Master Chorale from 1984-87. When The Orange
County Performing Arts Center opened in Costa
Mesa, Calif; in 1986, I performed in the very
first opera ever performed there (Amahl and the
Night Visitors).
My autobiography
entitled "There's Weirdo!" was
published in VOICE Magazine in September of
1987. I have been a member of Toastmaster
International now for almost nine years, and the
organization has further helped me to rise above
Tourette Syndrome by helping me to be a better
communicator and listener. I have won first and
second place trophies in 18 major speech
contests in the last few years. I also have
seven different web pages published on our
Toastmaster District's web site (www.foundersdistrict.org).
I am now enjoying a wonderful career in
Healthcare at St. Jude Occupational and
Environmental Health Services in La Mirada,
Calif. Most of my life has consisted of
"Rising Above Tourette Syndrome" and
not letting it hold me back from being all that
I can be.
Story
No. 38
Single
Mother Struggles to Cope With Her Son's
Newly Diagnosed Tourette's
My
son Jason was diagnosed with TS about a week ago
and as I sit here on your web sit reading, I
just can't help but to cry for my son and all
that are like him!! I still don't
understand a lot of things that go on with
Jason, or how people say they can control their
TS. Jason is taking 1mg of Orap a day, tomorrow
it will be 2mg and go up every week until it
helps with his TS. See Jason has many tics at a
time -- yelping, mouth movements, rolling his
eyes, jerking his head, shrugging his shoulders
and now with this med he has even starting to
jerk his arm and his leg.
I
don't know how to explain this syndrome to my
son so that he can understand what he has
because I can't even try to explain without
crying I know that he gets teased a
lot at his soccer practice because kids don't
understand and Jason thinks that the kids don't
like him even though Jason is a great kid. He is
so loving and generous that I just can't see
anyone not excepting this. His father and I are
not together any longer and he doesn't accept
what is happening he says that he just needs
discipline. Well that is what I thought about
his yelping until he started doing it in his
sleep and every three seconds. I felt so guilty.
Then
I took him to the doctor and she said that its
nothing and that he had allergies and gave him
an allergy med. Two weeks later we were back and
the sound was much louder and higher pitched she
said that I was being overly concerned and that
I should ignore it, that I was making a big deal
about nothing!!!! I knew better, I thought
this doctor was stupid , so I asked for a second
opinion and FINALLY another doctor stated
that he thought that he had TS and he would send
him to a Neurologist. I just don't understand
why it takes so long for someone to
listen?? If their is someone with a
similar story or you would just like to share
your experience please email us at brunett4@gte.net
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