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.
|My Fragile Giant and I at Coors Field