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Introduction
This section of
our site contains the true life stories (see
below) of people with Tourette Syndrome and/or
their loved ones. This section of our website is
several pages long. We have placed several
stories on each page. You will find links
to stories beyond the ones on this page on the
left-side menu bar
Instructions
for Submitting Your Story
Tourette-Syndrome.com
encourages you to write
and send us your personal story --
reflecting the ups and downs of you or a loved
one's life with Tourette Syndrome.
We
encourage you to speak from your heart,
conveying to others the difficulties you've
experienced and the challenges and obstacles
you've overcome. Tell us how
Tourette's has affected your life and the lives
of those around you or a loved one that may have
Tourette Syndrome. Many children and young
adults that live with Tourette Syndrome often
claim the disorder has helped them be a better
person, and that the friendships they do have
are much stronger than the bonds so many friends
claim to have.
Let
your story be an aid to help others deal with
this disorder -- being sure to point
out how you have learned to live with Tourette's
and the positive points you can share with
others. My son practices the old slogan,
"If life gives you lemons, make
lemonade!" We are very interested in
hearing the positive points you can share with
others to provide them with the optimism they
require to enter a new tomorrow in their process
of coping with Tourette's in their lives.
If
you are in need of an emotional uplift yourself,
please speak out -- there are many people
wanting to reach out to those that need help.
May God bless you for your help in making this
site a beacon of love and hope for all who live
with Tourette Syndrome disorder.
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Sincerely, |
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Craig Whitley |
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A
SPECIAL NOTE TO BOTH READERS AND ARTICLE
SUBMITTALS:
Please note that unless you specifically tell
Tourette-Syndrome.com to use your real last
name, we will automatically change the last name
of you and any family members listed in your
article to protect your real identify.
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Stories 6 thru 10 on Next Page
1.
"Accepting Tourette Syndrome is the First
Step Towards Surviving the Disorder"
Written
by a brave survivor, this young lady from Ohio
describes how she survived the most difficult
years of her life. Her plight with TS has taken
her from being a teenage guinea pig to a loving
soul wanting to reach out and help others with
Tourette's. Stepping out on her own at 17,
here's a great story for young TS adults trying
to handle the difficulties that TS presents
during your first years of independence from
home, relatives and old friends. A story with a
happy ending, but not without struggle, strife
and loneliness. A good read for all TS patients,
but particularly females.
Once
upon a time….I was a happy, well-adjusted 12
year old girl. I grew up in a large Catholic
family, Mom, Dad & four sisters in suburban
Ohio. One of my favorite pastimes was sprawling
on the living room rug watching TV with my
sisters. When something funny or exciting
happened they would laugh and I would squeak and
hunch my shoulders. When they were nervous they
would get quiet or maybe chew their fingernails;
my eyes would blink rapidly and my arms would
twitch. I had this "habit" of twisting
one finger inside all my other fingers one at a
time. It just felt right.
Often
I couldn't stop clearing my throat and whenever
I dressed for school I would shrug my shoulders;
sometimes for 15 or 20 minutes until it
"felt right." My parents would yell at
me to stop whenever I became particularly
irritating but my sisters never made fun of me.
It had been this way for a long time. It never
even crossed my mind that there might be
something wrong with me. And then one day my
mother decided to take me to the doctor . . . .
. . . . . . .
Suburban
Ohio in the 80's -- the first local Tourette's
case. I became a guinea pig for every local
Neurologist and research group. I was poked
& prodded, tested & psychoanalyzed. I
began to believe that something was wrong with
me. I now had a label. "The Tourette's
Syndrome kid". My family, teachers and
schoolmates all began to watch me anxiously
waiting for me to burst out in colorful curse
words. Of course this never happened but they
never stopped waiting. From that point on…I
ceased to have friends. It was almost as if the
label had pointed out that I was bad and
unworthy of love.
My
parents went the medication route. The local
neurologists in their exuberance prescribed me
so much Haldol that I slept through most of the
next 8 months. When they tried to change the
medication I put a stop to it all and refused to
take anything. I became quite adept at
controlling my tics, disguising throat clearing
with coughs etc…. and never allowing myself to
feel excitement or nervousness.
The
next year I was the subject of my eldest
sister's science project. Needless to say; I
withdrew a bit. I didn't have friends; I didn't
have boyfriends and I hated my family for the
next 10 years or so. The good news is I became
very independent and outgoing once I left home
at 17 after finishing high school. The bad news
is that I was lonely and never learned social
skills that most people develop in their teenage
years. Age 23 brought therapy when I hit rock
bottom. I was still in denial about having
Tourette Syndrome…so much that even though I
was an avid reader (sometimes 3-5 books a week)
I never once read anything on TS.
Age
26 and the inevitable happened; I was reading
one of my favorite fashion magazines and
accidentally read an article written by a girl
with TS and OCD. This opened the floodgates and
I started to deal with the past. I contacted the
Tourette Syndrome Association in NY. They
referred me to a specialist in my area who
started me on medication and I started seeing a
therapist specifically to deal with letting go
of the control over my emotions and physical
reactions that has become second nature. It is
an uphill battle but it feels good to be
confronting it all.
I
am glad to see that there is so much more
information available these days on TS and that
people are working to overcome the stereotypes.
I recently moved to a new state with a new job
and it is obvious how much public education
needs to be done. No one at my new company is
aware that I have this condition, I'm still the
"master disguiser" but I couldn't have
been there more than a month when I was told my
first Tourette Syndrome joke by a co-worker. I
pasted a fake smile on my face and nodded at the
joke but didn't enlighten him. Cowardice? I
suppose -- but you know what? I'm working on it!
Signed,
Thankful
Survivor
2.
"Squeaking With My Dad"
written
by the mother of a TS teenager
How
Two Understanding Parents and Great Personality
Traits Can Make a World of Difference in the
Life of a Tourette Child
This
article tells the story of a young girl going
several years with Tourette's before her mother
discovered the real cause her hers tics by
conducting research on the Internet. A young 14
year-old honor student, this child has learned
how to survive the social stigma or trauma that
many TS children experience by being honest with
her friends and having loving and understanding
parents and a father that "squeaks"
songs with her.
I
spent nearly ten years living with a child I
could not cope with. When she was two, she would
obsess over the strangest things...the seams on
her socks...naptime (bugs could get on her bed!)
- you name it, she screamed over it. Once she
would get on a tangent, nothing seemed to calm
her. It was at this time that she developed
facial tics, although at the time, I thought it
was the stress from whatever she was upset over.
I went from counselor to counselor, all of them
told me that I had a problem.
When
she started school, Linda longed to be the
teacher's pet, however by third grade, her
teacher told me that she was insubordinate. She
would tell Linda to sit up, and quit playing
with her hair bows, but Linda would play with it
anyway. When we discussed this, she told me that
she HAD to play with the hair bow. Believe
me.... I was ready to commit both of us to the
asylum! By the time she was 10, she developed a
little "squeak" I thought this was a
peculiar habit, and ignored it at first.
Finally, it grew so loud, I took her to a
doctor. He said it was a tic. This made me
remember another possible tic she had at 8,
which only lasted 2 weeks - this involved head
jerking and rolling (the previous doctor
diagnosed this as post-fever).
Finally,
I began to put three and three together.. By
searching on "tics", and
"obsessive", I landed on a TS page. I
read similar stories, and began to suspect this
could be my daughter's problem. I then found a
wonderful Child's Neurologist, who confirmed my
suspicions. He also provided material which
helped explain the past 10 years of anguish.
Apparently the behavior at the young age of 2
was not unusual. I only wish I could have found
this out earlier, rather than sitting through
therapy sessions, during which I was made to be
the monster! I always felt that SOMETHING was
not quite right, and it was not my parenting
skills!
Linda
has continued to make me proud. She is a 14 year
old honor student. She has not progressed (?)
past the mild vocal and facial tics (no wearing,
or grunting) and made the decision to not take
medication for as long as possible. She claims
it dulls her brain. She tells her new friends to
ignore any squeaking they may hear, and most of
us tease her lovingly, to get her through the
squeak periods. Her father squeaks with her
(they squeak their favorite songs!) And usually
the tic subsides within the week. She says that
she would only take drugs for the TS if it
becomes completely disruptive. Generally, during
school, she will excuse herself, go to the rest
room, get a drink...etc She is 100% aware of the
problem. The doctor says she should not try to
hold it in, since it generally makes it worse.
We're very proud of her, she does not see this
as an affliction - just a nuisance.
Signed,
A
Proud Tourette Mother
3.
A Typical Letter From A Concerned Parent
Dear
Tourette Syndrome Online:
This
is just a quick note since you request feedback
from those of us who 'hit' your website. My
10-year-old son, David, has had 'behavioral
problems' since he was very young. I have done
what any parent would do to help him and to find
possible contributors to his difficulties. It
has been very difficult to get 'professionals'
to help you help your loved ones. Finally, this
week he was suspended from school for his
actions. I have been trying to get a referral
from his insurance for a child psychologist, and
unable to get through, leaving messages that
were not returned, and increasingly frustrated
because I felt I just could not help my son, I
was very discouraged. But as I said, FINALLY, I
got through the very evening the Principal
called to inform of what had happened at school.
We have found promise in Dr. Cowan here in
Staunton VA! I do not know that David has
Tourette's, however, the book I got from our
local library, "Children With Tourette
Syndrome", (edited) by Tracy Haerle, has
shed light on the probability that this is what
my son has been living with. God love him, he is
such an awesome kid! Anyway, I will keep in
touch, and keep a journal, of our journey
through this time in our lives. I hope this is
encouraging to you too.
My
short note has become quite lengthy, sorry.
P.S.
I found your website with a search on my
homepage.
4. "Pools
of Water"
written
by a Proud Mother
This
story reflects the heartache and love than can
come from parenting a Tourette child. The story
of Keith, a young ballplayers with big blue eyes
that must concentrate harder than ever before to
"keep them open" when throwing a
pitch, this wonderful mother shares with us what
it felt like to learn her child had Tourette's
from watching a network talk show and how she
and her husband have learned that although they
cannot "fix" their son, there is also
nothing for them or him to be ashamed of either.
How
wonderful for all the information on Tourette
Syndrome. A few years ago my middle boy was
diagnosed with Tourette's. Around the age of
eight my son began blinking his eyes. Those big
sky blue eyes soon became squinted almost all
the time. I missed seeing the color that look
like pools of water.
Soon,
other parents began to ask me if Keith had
allergies. At first the doctor believed that
Keith had developed nervous tics. Child hood
tics that would disappear in a short while.
Instead Keith started grunting , sniffing and,
scrunching up his face. This time I took him to
the doctor to have allergy tests done. The test
came back ..... no allergies. My husband and I
were instructed to ignore the tics. The more we
brought it to Keith's attention the more he
would tic. This was the doctors thoughts. As
these symptoms became more noticeable my husband
developed other thoughts. He believed that we
could demand Keith to stop. He believed that
this was just a bad habit that we allowed Keith
to develop. This made for trying moments of the
wills. I tried to keep my husband from nagging
our boy and my husband along with his father
believed that it needed to be stopped.
One
day on a "network talk show"they had
children with severe symptoms of Tourette. My
heart went out to these children. Then they
talked to a boy who had more mild symptoms. My
mouth fell open and my heart broke. This boy was
grunting and blinking and scrunching up his face
exactly like my son does. I went right to the
phone and called our doctored. I told him about
the show and my thoughts that Keith's tics may
be Tourette. His words pierced my heart ,two
simple words,"I agree. I'm going to get him
an appointment with a specialist."
It
was a long wait until that appointment. I knew
nothing about Tourette's other then what I had
seen on television. I thought about the more
severe tics and worried. Do these tics
continually get worse and worse until they can
no longer play sports. As I looked out at him on
the pitcher mound blinking and throwing the
ball. Then later grunting and hitting yet
another home run I had to stop and face what was
in my heart. Maybe next year he won't be out
there. How could I ever tell him that.
This
all came from no education on the subject and
from talk shows putting the most dramatic
stories out to the public with very little
explanation. He was diagnosed with Tourette's
and it hasn't slowed him down one bit. He is
still pitching for his team and hitting home
runs and grand slams. While pitching his tics
increase but he has taught himself a little
pattern so his eyes stay open while he throws.
His team was undefeated for the past two years
and won all championships. His soccer team was
also undefeated and won their championship. He
also plays great in basketball with only one
loss for the season. With this and trick biking,
rollerblading and snow boarding he has shown to
me over and over that Tourette hasn't slowed him
down in any way. He still loves and enjoys
everything he always had.
It
took his father a little bit to get use to the
idea that he could not fix his son nor did we
want him to. We look at Tourette as just a part
of Keith ...like his blue eyes. Nothing to be
ashamed of and never to be used as an excuse.
Thank
You from a "proud mother"
5.
Confessions of a Happy Ticcer
This
article was e-mailed to Tourette Syndrome Online
by a young married man who grew up with Tourette
Syndrome not knowing about the disorder and only
discovering TS and making a self-diagnosis after
going online and stumbling across a Tourette
Syndrome website like this one. He seems
exceptionally well-adjusted and possesses the
right attitude for coping with TS on a daily
basis. I pray that if his baby is born with
Tourette's it will be as mild a case as he has
experienced in his life.
Ever
since I was a kid, I did stuff I didn't know why
I did. Sometimes I'd come up with reasons why,
or find ways to disguise what I was doing. But
inside I knew I couldn't stop them. Sometimes
this really bothered me, but most of the time I
really didn't care. Oh sure, I got teased in
school, but we ALL picked on each other, so I
never felt singled-out. And when I moved to the
East Coast for high school, I got teased more
for my Texas twang than for any of the strange
sounds or movements I'd do.
It
wasn't until after I'd finished college, and was
working in a computer related job, that I
finally discovered the truth. I'd occasionally
surf the net when I had the computers running a
long process, and one time I came across a web
site that mentioned this
strange thing called Tourette Syndrome. "Oh
wow!" I thought, "Poor people! I
wonder what it's like?" So I started
reading, and reading, and reading some more.
"But this is all so normal!" I
thought.
Oh...
It
turns out I had TS, ADHD, and OCD. Over the next
year I read as much as I could, learned as fast
as I could, and came to terms with a part of me
I'd never explored before. I found out one of my
co-workers also had the TS+ trifecta, so we
pooled our efforts, and learned a ton.
Going
to the TSA National Conference was fantastic. I
got to meet a number of people I'd only known
online, and got to see and hear all manner of
tics I'd only seen written down in books and
online web sites. We had a blast, and basically
took over the conference hotel for the duration.
It was a wild place and a wild time, and I'll
never forget it. (I can't wait for the next
one!!)
And
now that the whirlwind learning experience is
slowing down a little (slowing, but never
stopping), I can answer some questions for
myself:
Do
I wish I didn't have TS? No. My vocals aren't
bad any more, and people don't really notice my
motor tics. Actually, I'm having a lot of fun
with it.
Am
I medicating for it? No. None of my tics are
self-injurious, and they don't keep me from
functioning on a day-to-day basis. So I don't
really see the need.
Do
I have any plans for the future? You bet! My
wife and I are expecting our first child, and
it's already a very very active baby.
(The
OB-GYN asks if we've felt the baby kick, and we
just about fall over laughing.) Whether or not
our child inherits TS, I think we'll have our
hands full. And if our child does wind up having
TS, that's fine by me. Quite frankly, I'm
looking forward to it. My friend at work, the
people I met at the National Conference, and
other people I've known online are some of the
finest people I've ever met. If our children
wind up inheriting TS, then I know they'll be in
fantastically good company. I know I am.
Thanks,
A
Happy Ticcer
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