and while i haven't been able to wrap it up in text, i found it today, already written... all laid out simply and beautifully in my daughter's informative speech.
so here you are, an unedited account of grace that overwhelms me, written by alyssa's hand. it's hard for me to consider this without tears. i come undone. grateful beyond words.
trusting this is meant to bless someone.
lisa
Tourette's Syndrome
Imagine you are four years old, in
pre-school. Your teacher tells you to sit still, but, for some reason, you just
can’t. You try your hardest, but it’s like your body has a mind of its own.
Repetitively, you make gestures and noises that you just can’t seem to control.
Your teacher tells you to stop that clapping, that hopping, that clicking of
your tongue. You try. Really you do.
You are in second grade. Your tics are more frequent now. Mom has started to homeschool you, so you’re
no longer distracting to an entire class.
Mom gets distracted, though, sometimes.
So does sister. Sometimes they
even get crabby about it.
Fourth grade. The tics have grown more intense now. You have sequences of hops, patterns of
movements, numbers that you have to count.
These movements, sometimes they must be symmetrical. You know you’re different from other kids,
and you’re starting to resent that.
Tourette’s syndrome.
What is
Tourette’s syndrome exactly? It is neurological condition affecting 1 out of
every 100 people, more often evident in boys than girls. The first symptoms, which usually appear in
early childhood, are involuntary movements known as tics. These tics may be motor or vocal, often using
the face, hands, body, and mouth. As
explained in the book, A Family’s Guide to Tourette Syndrome, published
by the Tourette Syndrome Association, and by tsa-usa.org, motor tics are involuntary
movements of your body or face, such as hopping, shrugging, blinking,
grimacing, mouth movements, nose twitching, or head jerks. Vocal tics involve
your throat or vocal cords and may come across as grunting, coughing,
sniffling, spitting, screeching, throat clearing, and even barking. Tics may be
simple or complex. A simple tic would be any tic that occurs by itself, while a
complex tic would be the combination of multiple tics. Some examples of complex
motor tics include facial gestures, biting patterns, touching objects or
yourself, and the thrusting of one’s arms.
Complex vocal tics could be words or phrases spoken with certain rhythms,
tones, accents, or intensity. Complex vocal tics also include the echo
phenomenon, which is immediate repetition of another’s or one’s own words. In
order to be diagnosed with Tourette’s, you must have tics for at least 12 months,
and you must have both motor and vocal tics.
In
1885, George Gilles de Tourette, labeled the condition “maladie de tics”
(French for “tic sickness”). His teacher, Dr. Jean-Martin Charcot, was very
impressed, and thus named the disorder after his student. In the early
twentieth century, doctors were divided over what caused Tourette’s and how to treat
it. During the 1920s, Dr. Sigmund Freud called Tourette’s “hysterical trauma.”
Most doctors accepted this until the mid-twentieth century. In 1965, Americans
Arthur and Elaine Shapiro successfully treated a patient using medications. Dr.
Shapiro joined other patients and parents of patients in 1972 to form the
Tourette Syndrome Association.
While
Tourette’s syndrome does not have a cure, some treatments have been found to
help. Treatments have explored medications, allergens, brain chemicals, and
diet in an attempt to bring relief to Tourette’s patients.
Tourette’s
has affected my family. In an interview with my brother and my mom, I learned
what it is like to have Tourette’s syndrome. My brother, Nathanael, has had
tics since age four. At first my parents didn’t pay much attention to his tics…
they just thought he was a squirmy kid.
But gradually, Nathanael’s tics got worse. They increased in number,
complexity, and intensity. He had lots of different motor and vocal tics: shrugging,
hopping, neck rotating, blinking, throat clearing, coughing, and tongue clicking.
He even had a tic for a few months where he’d need to touch his nose to the
table when he was sitting down. And there was the tic compelled him to simultaneously
blink his eyes and tap his fingers while riding in the car. Nathanael did an
incredible job of covering up his tics, though. Unless you knew him really well
or knew what to look for, you might just think he was really hyper or moved a
lot. But by 2013, his tics were changing his quality of living. It was
difficult for him to concentrate in school. Can you imagine how hard it is to
do schoolwork when you need to keep touching the table with your nose? Even the noises he made were distracting him.
Tae Kwon Do was equally challenging. He wanted to stand still and focused, but
he was constantly rotating his neck, shrugging, and hopping. Basketball
frustrated him. He couldn’t run down the court without jumping and pulling up
his socks every two steps or rubbing his face while guarding an opponent. By
this point, Nathanael’s tics had an element of counting and symmetry. This
indicated OCD (obsessive compulsive disorder), which is a common co-morbid of
Tourette’s. My mom and dad, who were deeply concerned about my brother, took
him to a neuropsychiatrist. She officially diagnosed Nathanael’s Tourette’s and
suggested he might try various medications and participation in therapy. My parents
decided against this course of action. They weren’t really opposed to it, they
just didn’t feel peaceful in prayer about it. They felt that God was leading
them down another path.
My
parents began aggressively researching holistic treatments that had proven
helpful to other Tourette’s patients. One
such approach included a gluten-free diet.
Within a week, Nathanael’s tics improved immensely! We estimated that there was a 75% reduction
in tics! Though overjoyed at the
improvement, my mom hungered to know more about my brother. During online research, Mom found a local
physician by the name of Dr. Toth. Although she felt she wanted to take Nathanael
to see this doctor, Mom really didn’t know if this was a sound decision. So Mom and Dad prayed, specifically for
someone we knew to give them a recommendation for Dr. Toth. Over the next
couple weeks, four people mentioned him in conversation with overwhelmingly positive
words. (My mom considers this one of the many miracles along the research
path!) Mom, Dad, and Nathanael went to see Dr. Toth. He suspected, based on Nathanael’s health
history, that yeast, or candida, overgrowth in the intestines might be contributing
to Nathanael’s symptoms. As a treatment
plan, he advised that we needed to starve the candida in the gut. Additionally,
he wanted to regrow the good bacteria in Nathanael’s intestines.
To confirm that candida, or yeast, overgrowth
was plaguing Nathanael, he was given a yeast test. The nurse slowly gave him
some yeast drops under his tongue. Within minutes, my brother went from happily
reading his book and joking with the nurse to squirming like mad and getting angry
at everything!
Dr. Toth’s method for removing the
candida included four parts: anti-fungal medication, probiotics, yeast antigen
drops, and diet. Nathanael took
anti-fungal medicine to kill the candida.
He also took probiotics to regrow the good intestinal bacteria. Yeast antigen
drops under his tongue were taken three times a day to get his body accustomed
to a healthy amount of yeast. Finally, we followed an eating plan that
aggressively aimed to starve the candida in the gut. This eating plan took lots
of familiar foods out of our diet: yeast, sugar, alcohol, vinegar, cheese,
honey, bananas, mushrooms, concentrates, and gluten. It was meant to starve the
yeast, and it worked! Nathanael’s tics are 99% gone. Occasionally, we still
notice an old tic or two from time to time, but he’s like a completely
different kid. We are all so thankful that we have found a method to help my
brother with Tourette’s syndrome!
You may
ask, “How can I help others with Tourette’s?” The book, Can I Tell You About
the Tourette Syndrome, published by Mal Leicester, has some good answers.
Don’t copy tics. Don’t keep on about tics, and don’t tease or call people with
Tourette’s bad names. Also, understand that their tics are not done on purpose
and that they have the same feelings as you and I do. God created all of us
equally, in His image. He made each of us unique. And we’re all special, even
if some of our lives have difficult challenges to overcome.
In
closing, permit me to leave you with this powerful quote shared from a piece of
my ten-year-old brother Nathanael’s writing:
Will I always have Tourette’s
Syndrome? Maybe. God created me just the way I should be, so Tourette’s Syndrome
is O.K. – it’s part of me, and it makes me special. But, I’m really thankful
for everything that God’s done in my life this last year because it has helped
me see that he is powerful enough to do anything!
