Tourette
Syndrome Life Stories
Story No.'s 22-27
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Stories
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Story
No. 22
Doctors
Confuse Tourette Syndrome and OCD With Smallpox
Craig,
I'm another of
those who was never properly diagnosed until I
was in my 20's. However, all my life the one,
pervading thought I was plagued with was the
knowledge that something was "wrong"
with me. That I was different from the other
kids and didn't know why. One of my earliest
memories is standing in my crib, starting at
spot on the wall and screaming "fly!"
at the top of my lungs. I was obsessively
horrified of bugs, and physically oversensitive
to the point where I could not stand the texture
of anything crunchy in my
mouth, could only take lukewarm baths, and my
poor mom had to fight a major war to comb my
hair! On the positive side, I developed language
skills early, reading third-grade level by
kindergarten, college level by 5th grade. I
loved to engage adults in conversation. In the
early years, my preciousness often acted as a
buffer between me and my teachers, helping them
to overlook my other, stranger behaviors.
O/C behavior started when I was five. I would
pick up my food and hold it in both hands -
going through a careful ritual before I could
eat, which included sniffing, biting a
particular corner, sometimes re-shaping (bread)
or totally squishing (cake) before it could be
eaten. I began to invent complex bathing and
bedtime rituals which *had* to be done before I
could end my day. In all of these, my mother was
infinitely patient. (My father had left us when
I was still an infant). By the time I was ten,
I'd developed tics, constant blinking, grunting,
grimacing, and chewing the inside of my mouth
and lips until painful sores formed. It
had gotten to the point where even my teachers
were at their wits end. I was taken to several
doctors and specialists, one who decided I had
smallpox and gave me monthly smallpox shots for
two years. When that produced no changes, we
tried a psychiatrist who talked to me for ten
minutes every two weeks for a month, and decided
my real problem was "nervousness" due
to the fact that I had no father figure. My
mother was advised to go out and find one as
soon as possible! She declined that advice and
decided to just accept me as I was.
My peers, however, were not nearly as
accommodating. I was the spectacle of my school.
Children of all ages would follow me around,
starting, waiting to see what bizarre thing I
would do next before competing with each other
to mimic it the most accurately. Calls of,
"Hey, girl! Girl!" plagued me wherever
I went, as kids would try to get me to witness
my mockery. It got to the point where any
laughter I heard started my stomach churning,
even if it wasn't directed at me. I became
withdrawn, living in a world of books and
hobbies, shunning school until truant officers
would come hunting for me and make me return.
Then... a miracle occurred. When I was twelve,
the tics started to subside.... then vanished! I
started a new school in a different neighborhood
and discovered for the first time in my life
what it was like to have friends and belong to a
peer group, even though I constantly battled
intense self-consciousness, always afraid others
would discover the "truth" about me
and the cycle of rejection and hurt would start
all over.
When I graduated high school and got my first
real job, a strange thing started happening. I
found that if I turned left to go around a
corner, I *had* to turn right to
"correct" it. Then I started
developing a powerful
urge to say the same thing over and over to
myself or something terrible would surely
happen. The O/C had returned with a vengeance,
though I didn't have a name for it at the time.
I fought like the devil to keep these things as
hidden as I could and somehow managed not to
attract undue attention, though I did become
withdrawn after awhile. Then.... after about two
years, this too faded slowly away.
Finally, when I was around 25, I happened upon a
pamphlet about TS someone had left lying around.
As I read it, it was as if the entire sky had
opened up and pulled me up and away. My entire
life explained by a simple disorder... one that
other people actually SHARED with me! I was
*not* alone!
Today, I am 33 and only experience relatively
"minor" tics, most of them internal.
It's hard sometimes to keep my mind quiet, it
likes to repeat stuff a lot! Listening to music
softly in the background helps me
considerably with that. I have a wonderful job
and great friends, only a few of who know I have
TS and only because I told them. My love of
reading has become a love of writing as well,
which give me great pleasure. Also, I have
discovered that hiding underneath my
trauma-induced shyness (which endured
even into my late 20's) I have an actual
*personality* complete with a sense of humor and
love of fun, and now enjoy life in a way I don't
believe I ever could have if I had a
"normal" childhood.
Recently, my six-year-old nephew has been also
diagnosed with TS. I'm so happy that he'll never
have to go through the years of ignorance (my
own and other's) that I did! The knowledge and
options available to him are much greater than I
could have ever dreamed of most of my life.
Regards,
Joanne
Story
No. 23
"Because
I Can"
Hi
my name is Cindy and I have a 14 year old son
named Jonathan, who at the age of 8 was
diagnosed with Tourette's. Jon also has
ADD, Dyslexia (mild) OCD. He is also a
very bright boy. He has a very big
heart. He is also scared to let anyone
know he has TS. If his peers ask him why
he does that with his mouth or makes a noise
etc. He just answers "because I
can."
Like
your son John, Craig, my Jonathon also has
a mild case. His tics change a lot. He may
shake his head and clear his throat a lot to
twisting his mouth all out of shape to blinking
his eyes repeatedly, he has had trouble
swallowing his food before because he was having
a tic way in his throat that wouldn't let his
food go all the way down and he was throwing it
back up. And trying to keep his stress
level down to help his tics, this is a chore in
itself.
School
is a whole new ballgame. We live in a small town
in Texas and we moved here when Jon was in the
4th. grade and I set up a meeting to let all the
teachers know of Jon's special needs in
school. And not one of the teachers had
even really heard of Tourette Syndrome. Jon is
now in the 8th. Grade and it has been a tuff
haul. But it has also helped me in trying to
learn more about TS.
We
do not have a support group near us. It is about
a 2 hr. drive away. And to my knowledge Jon has
been the first child in our town to come forth
with TS. I'm sure there may be others but
I have not heard of them and the schools have
not. Jon has been the first. Jon has also
been an inspiration to a lot of people that if
you are determined you can do anything.
Thanks
for listening,
Cindy
Story
No. 24
"You
Will Bear a Son. You will Name Him Joshua,
and He Will Make You Proud"
I
have always been a smart kid; but now that I
think about my life, I realize that my finest
achievement has nothing to do with academic
accomplishment. As a person afflicted with
Tourette's Syndrome (TS) and associated learning
disabilities - ADHD, for example - I have had
many obstacles to overcome.
Young
boys with TS are a handful, and I was the
poster-child of that fact. I was born
mischievous. In fact, the nurse who handed
me to my mother to hold for the first time said
to her, "Keep your eye on him. He's
gonna be a handful." I never ceased
to disprove that nurse. I don't think my
mother knew exactly what was in store for her
when she took me home from the hospital - and
this is where the real story begins.
I
recall a story my mother told me about a trip to
the supermarket. Every child has some toy
that he or she holds dear to them - a teddy
bear, a GI Joe, you get the idea - and mine
happened to be a set of Fisher Price keys.
As my mother pushed me in the cart down the isle
at the supermarket, we approached another mom
doing the same with her son. For some
reason, the shopping carts were stopped next to
each other and the kid in the shopping cart next
to me grabbed for my keys. I didn't like
that at all. Those were my keys. So
I politely yelled to the nice boy, "Get
your God damn hands off my f***ing
keys!" just like every good boy would
do, because I wanted to make my mom
proud.
She
was so embarrassed. You have to understand
my mother. She is the type of person that
always makes her best effort to please everyone
all the time and remain in excellent standing
among neighbors. She is a very caring and
compassionate person as well. So you can
understand how much I must
have embarrassed her. Needless to say, the
embarrassment did not stop there. That
brings to mind the day a neighbor moved in next
door: I proudly walked up to the door and
rang the bell, and when my new
neighbor answered the door, I looked up at him
(I was six, mind you) and said, "Hi, I'm
Josh, and you're a f***ing
a**hole."
What
a polite young man, he must have been
thinking. I also remember the airplane
trip: I decided to celebrate my first ride
on an airplane by tearing my mother's blouse
off. It so happens that she was lacking a
bra that day, and she did not find my method of
celebration that amusing. It was antics
like
those that lead my mother down the path to a
nervous breakdown. One day, she
called a child abuse hotline saying she wanted
to kill me. I think that was the day I
tore the couch cushions up on the roof to make
snow.
By
the time adolescence rolled around I had
developed some new interests: I liked to
fight, and I liked to play with fire. Upon
my being expelled from the local junior high, my
parents realized that the family needed a fresh
start; so we moved to a small community just
twenty minutes away. I lasted about a
month and a half at the new junior high.
About two weeks in, I started getting into a lot
of fights. I wasn't a bully or anything, I
just found myself in very bad and uncompromising
situations.
Over
the next three weeks, I got in about six fights
and was suspended four times. The staff
was so
concerned about me that they had a psychologist
speak to me. I didn't like her very much
so I told her that "I was planning to kill
my parents, dismember their bodies, and live off
of the insurance money, "just to get a
reaction out of her. And get a reaction I
did: She called my parents immediately and
told them to leave the house.
To
this day, I cannot believe she took me
seriously. About a week later, my poor
mother caught me running down the street with a
gas can and matches. Later that night the
family took me for a pleasant ride to a mental
hospital. They said that they loved me
very much and that this was for my own
good. I spent the next six months of my
life and my twelfth birthday in that
place. The purpose of my going into the
hospital was to control my temper and TS with
medication and discipline, and to educate
me.
I
always loved to learn. That was the one
thing I really liked. My mother tells me
that as soon as I learned to read, my head was
in her medical books. During my six months
at the hospital, I found that I was really good
at mathematics. As I look back, I realize
how much that hospital helped me. I not
only learned some math, but I learned to focus
as well. I left that hospital a totally
different person. I am fortunate that I
have such excellent parents. They care
about me a great deal, and I am certain that if
they failed to take that
one step, I would be dead today.
My
high school years, in my opinion, were wasted
years. I skated through the scholastic
aspect of high school, but I never made many
friends. In fact, I do not think I made a
single friend by that word's definition. I
think that aspect of high school is very
important in shaping an individual in American
culture. So, I think that I missed out on
a lot; but on the other hand, I never got in
trouble, and never got in any fights. I
also began to receive some decent grades.
That was just about the time that my parents
began to tell me how proud they had become of
me. Those were very pleasing words to
hear. I had always
felt like a burden to them, and it has a lot to
do with the story I am about to tell you.
At
an early age I was curious about the origin of
my name. So I asked my mom why I was named
Joshua, and this is what she told me:
Before I became pregnant with you, I had a
dream. And in this dream God came to me
and said to me, "You will bear a son.
You will name him Joshua, and he will make you
proud."
My
mother was, and is, a very devout Christian, so
she most assuredly took that dream
seriously. Can you imagine how she must
have felt during my first twelve years? Do
you think that maybe she was ready to give
up? Do you think that maybe she began to
doubt her faith? Surprisingly, the answer
is no. Those thoughts had never entered
her mind. The only thoughts she had were
ones to the effect of, "When Lord?
When will he make me proud?"
As I
progressed through high school, my mother met
some interesting people. One of which
referred her to a woman who happened to work for
the Department of Rehabilitation. A
meeting was set up to speak with her about my
aspirations to become a doctor. I was set
up with a vocational scholarship in the area of
computer science - strangely enough - and even
though I was not interested in that field, I
took it anyway thinking that I could always
change majors down the road. At least they
were paying for my general education.
Another benefit was that my parents could not
afford to send me to college, and I needed to be
in school to continue receiving benefits from my
parents' medical insurance carrier to pay for
the extraordinarily expensive medication that
they also could not afford.
In
order to stabilize my TS, the doctors had put me
on a regimen of very expensive dopamine
controlling drugs that I was still taking four
years later. So this was a win-win
situation, I suppose. I find it an amusing
paradox that my TS was an obstacle, but also an
asset. It held me back in my early
years-and my family was ostracized because of
it-but without it, I might have never been the
first member of my entire ancestry to attend
college.
In
that regard, I am exceptionally proud of myself,
as well are the members of my family. But
prouder yet was the day I no longer needed
medication for my Tourette's Syndrome. For
the first time in my life, I felt normal.
That was such a big deal. The next
semester in school produced my next greatest
accomplishment: I received a 4.0 GPA for
the first time. I could not believe
it. I felt as though I had won the
lottery. I think that was the true
beginning of my life. Since then, my focus
has narrowed to the field of biochemistry and
the physics of physiology.
I
have always been a perfectionist. I have
always dreamed on the large scale, and I know
that I can do what ever I set my mind to.
And as big of an achievement as any of the
things I have discussed, none of them are my
finest achievements. My greatest is yet to
come. I will not rest until I have
received the Nobel Prize. That is my
goal. Well, that and the accompaniment of
my face on the cover of Scientific
American. Nothing less will please
me.
I
have always strived for excellence.
Although my grades often fail to communicate my
potential, I know what I am capable of.
But that knowledge is useless unless I have the
means to achieve my goal. I need a vehicle
to propel myself toward greatness, and nothing
short of a degree from a UC university will get
me there faster.
Regards,
Josh
Story
No. 25
"The
Best Day of My Life"
My story
begins as far back as I can remember.
Growing up with the tics, twitches, grunts and
coughs, I was diagnosed as most other Touretters
have been as being a "high strung nervous
kid". I was repeatedly told that I
needed to relax and they would go away (if it
were only that easy). The school nurse had
even prescribed I stare into a mirror for 10
minutes at a time 5 times a day and the tics
would go away (she meant well I'm sure).
THE TERRIBLE TEENS...
The tics become increasingly worst in my teen
years. My grades and social life suffered
tremendously. I started my long (and
continuing) path of low self-esteem and
insecurity. Deep down, I knew I wasn't
dumb or slow. My teachers all agreed that
I had tremendous potential but I would need to
apply myself more. In an attempt to fit in
with my schoolfriends, I started developing a
deviant type of behavior. Rebelling if you
will. As my teen years passed, my life got
worst. My continuous absenteeism from
school (skipping classes) got me kicked out of
high school and at the same time labeled me the
shame of my family.
ENTER THE ADULT WORLD...
Somehow, I managed to graduate high school and
directly entered the work force. I figured
getting a job might help me build up my
confidence. Things started going
well. I was dating on a regular basis and
had a large circle of friends. My tics had
subsided some since my high school days. I
was living what most would consider a normal
life. A few years later, I decided to
return to school. I signed up at a local
university. It didn't take me long to
realize that my problems with school were still
with me. No
matter how hard I tried, the grades just were
not there. I now started to fear that
maybe I was just plain dumb.
THE BEST DAY OF MY LIFE...
One day, I got a call from my sister who told me
she had been watching a talk show about people
with Tourette Syndrome. I had always
imagined people with Tourette`s went around
barking like dogs. The symptoms she
described were in essence ME! I
became obsessed with finding out more
information on
Tourette Syndrome (if only the Internet was
around then). I decided to see a
neurologist. Within 20 minutes, the doctor
had absolutely no doubt in his mind whatsoever
that I suffered from Tourette Syndrome. In
fact, he told me that I had the whole package,
tics, OCD and ADD. My reaction? I
told him
that although he had diagnosed me with a
lifelong disorder with no known cure, this was
indeed the best day of my life. I was
finally able to attach reasons to pretty much
all of my life's downfalls. I told my
parents who almost seemed to be apologetic for
`misdiagnosing` me all these years. I
tried clonidine for a little while and it did do
some good. I decided to stop using it
after about 1.5 years as I didn't feel it was
helping me anymore.
TODAY...
Today, I have a successful career in the
telecommunication industry. I have started
working towards completing a part-time degree
and my grades are no longer suffering. I
no longer try to hide my tics. I simply
deal with them. I still suffer from low
self-esteem and a lack of self-confidence, but I
have made progress.
Why am I writing this? Because there are
parents out there who are wondering how their
son/daughter will cope through life with
this. They canand they will. It's
simply a matter of perseverance.
Signed,
A Normal Guy Leading A Normal Life
Story
No. 26
"California
Parent of TS Child Gives Some Good Advice"
I
live in Carpinteria. My next store
neighbor, my son's best friend has Tourette's
and problems not as severe as your son's but I
can still relate. My son has Tourette's but I
don't have a diagnosis yet. One suggestion
is that you contact Professor Nelson at Cal
State Fullerton. I have a tape of her and
her son, David discussing his problems in public
school and he tells a story that makes me cry
about when he went to Prentiss Day School and
was around kids who understand for the first
time.
My
son and our neighbor put a lot of energy into
trying to appear normal in front of the other
kids. My son is usually so understanding
of the other kid, but he gets so so mad at
him. I try to tell him that the odd things
"R" says are due to language disorder
and tics and trying so so hard to fit in and be
cool. The Nelsons have excellent strategy
they used to get David "socialized"
with peers. He quit getting into fights, etc.
All
I know for sure is the horror stories I hear
from parents of spec. ed. kids in Santa Barbara
and Ventura schools, with Ventura being the
worse and Santa Barbara is just a
nightmare. It's bad too in Carpinteria,
but a thousand times better than SB and Ventura.
I'm going to grad school CSUN to be Spec. Ed.
teacher. I'm a teacher now, but just a sub
because all my energy goes into my 2 LD
kids!
Anyway,
there is an unbelievable great school in
Camarillo. One of my classmates teaches
there. I will look through my notes for
the name of the school if you want me to.
All I remember is that it is a public school
under some strange funding from the county or
the districts. If you call Camarillo
district they will tell you about it just from
those few clues.
My
classmate is a great teacher who knows how to
work with these kids. I just love
him I forgot his name too! But if
you find the school, he is totally dedicated to
these kids and will be happy to spend time to
help you. He is big and a coach and works
with kids in the jails during the summer.
So even call the Ventura county School office
and they will put you in contact with the
"jail schools" and get you in contact
with this teacher,. again, just those clues I
gave you can get you to him. We have to
help each other! Don't give up.
Signed,
Concerned
Tourette Syndrome Parent
Story
No. 27
"Keep
on singing sweetheart!" The Miracle of a
Brother's Song
Like
any good mother, when Karen found out that
another baby was on the way,
she did what she could to help her 3 year old
son, Michael, prepare for a new
sibling. They found out that the new baby was
going to be a girl, and day
after day, night after night, Michael sang to
his little sister in Mommy's
tummy. He was building a bond of love with his
little sister before he even
met her. The pregnancy progressed normally for
Karen, an active member of the
Panther Creek United Methodist Church in
Morristown, Tennessee. In time, the
labor pains came.
Soon
it was every five minutes, every three,
every minute. But serious
complications arose during delivery and Karen
found herself in hours of
labor. Would a C-section be required? Finally,
after a long struggle,
Michael's little sister was born. But she was in
very serious condition. With
a siren howling in the night, the
ambulance rushed the infant to the neonatal
intensive care unit at St. Mary's Hospital,
Knoxville, Tennessee. The days inched by. The
little girl got worse The pediatric
specialist regretfully had to tell the parents,
"There is very little hope. Be prepared for
the worst."
Karen
and her husband contacted a local cemetery about
a burial plot. They had fixed up a special room
in their home for the new baby-but now they
found themselves having to plan for a funeral.
Michael, however, kept begging his parents
to let him see his sister. "I want to
sing to her," he kept saying.
Week
two in intensive care looked as if a funeral
would come before the week
was over. Michael kept nagging about singing to
his sister, but kids are
never allowed in the Intensive Care. Karen made
up her mind, though. She
would take Michael whether they liked it or not!
If he didn't see his sister
right then, he may never see her alive. She
dressed him in an oversized scrub
suit and marched him into ICU. He looked like a
walking laundry basket,
but the head nurse recognized him as a child and
bellowed "Get that kid out of here now! NO
children are allowed!"
The
mother rose up strong in Karen, and the usually
mild-mannered lady glared steel-eyed right into
the head nurse's face, her lips a firm line.
"He is not leaving until he sings to his
sister!" Karen towed Michael to his
sister's bedside. He gazed at the tiny infant
losing the battle to live. After a moment, he
began
to sing. In the pure hearted voice of a
3-year-old Michael sang: "You
are my sunshine, my only sunshine, you
make me happy when skies are
gray." Instantly the baby girl seemed to
respond. Her pulse rate began to calm down and
become steady. "Keep on singing,
Michael," encouraged Karen with tears
in her eyes. "You never know, dear, how
much I love you. Please don't take my sunshine
away." As Michael sang to his
sister, the baby's ragged, strained breathing
became as smooth as a kitten's purr.
"Keep
on singing, sweetheart!!" "The
other night, dear, as I lay sleeping, I
dreamed I held you in my hands..."
Michael's little sister began to relax as
rest, healing rest, seemed to sweep over her.
"Keep on singing, Michael."
Tears had now conquered the face of the
bossy head nurse. Karen glowed. "You are my
sunshine, my only sunshine. Please don't take my
sunshine away...."
The
next, day ... the very next day ... the little
girl was well enough to go home! "Women's
Day Magazine" called it "The Miracle
of a Brother's Song." The medical
staff just called it a miracle. Karen called it
a miracle of God's love! Never give up on the
people you love. Love is so Incredibly powerful.
Craig,
please send this to all the people that have
touched your life.
This
inspiring message was forwarded to me from
someone participating in a Tourette Syndrome
discussion group with me.
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