My son is 6” 2” and 189 lbs at 14
years old. Rather than him looking up to
me, I look up to him in more than one way every day. He is a giant, but it turns out he is also
fragile.
We learned this summer that Jack
has a genetic condition tagged on the X chromosome, known as Fragile X
syndrome. Fragile X is tied to neural development thus being linked to autism and
mental retardation. Very early in life Jack
was diagnosed with Asperger's syndrome, a mild form of autism that is characterized
by difficulties in social interaction, non-verbal communication, along with
restricted and repetitive patterns of behavior and interests. Asperger’s is a
relatively new diagnosis named after Hans Asperger and first observed by him in
1944. Fragile X is also fairly new being
first identified in the 1970’s. Both
conditions are not something you cure, but rather something that you
manage. Fragile X affects approximately
1 in 4000 males and 1 in 8000 females.
We just think this makes Jack
special. In the most recent issue
(October 7, 2013) of Time magazine,
Temple Grandin (famous autistic CSU professor) and Richard Panek wrote an
article “What’s Right with the Autistic Mind” adapted from their book The
Autistic Brain (Haughton Mifflin Harcourt, 2013). In the article they state that “by focusing on the
deficits, we overlook the strengths of the brains built differently.”
Jack’s stature not only makes him
strong, but his brain is an uncanny strength we try to find ways to use every
day. With a near photographic memory,
Jack has an uncanny knowledge of history and sports trivia that we are
convinced may make him a Jeopardy champion. His different viewpoint on the world also
creates his own brand of comedy that keeps his whole family laughing.
Fortunately, in Colorado we are
lucky to have a unique specialty clinic for
children and their families affected with Fragile X syndrome, the Fragile X Treatment and Research Center at Children's
Hospital Colorado. With an upcoming
appointment with their specialists, our journey with Jack will continue as we
enjoy the adventure of living with a fragile giant.
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| My Fragile Giant and I at Coors Field |
