Friday, February 17, 2006

Fragile Friday

I have decided to declare it's FRAGILE Friday.
Allow me to explain...I have three children, two of whom are affected with fragile x syndrome. Many of you are probably saying "Fragile what?" (most common response we FX'ers hear...)

Fragile X syndrome is the most common inherited cause of mental impairment. The syndrome occurs in approximately 1 in 3600 males and 1 in 4000 to 6000 females.

Both Jonathan (moderately affected with MR) and Micaela (mildly affected with no cognitive impairment-Praise God!) are affected with fragile x. They inherited the gene that causes it from ME. Although I do not possess the full mutation, I have certain characteristics that make me unique.

So I thought in an effort to share something of myself and increase awareness, I would declare Friday to be FRAGILE FRIDAY. I will share something with you about this and how it affects my life.

So today....I want to tell you about my HEARING....Typcially kids with with FX have VERY good hearing. I am no exception to this. It is both a curse and a blessing. My husband teases me saying that should go work for the CIA because I have freaky hearing. I do.

I do have freaky hearing. It's true. I can sit on one side of a room and hear people whispering, I know their secrets (I don't want to), I hear intimate details (which are interesting but a burden to know)'s a curse, too. I didn't know until after Jonathan's diagnosis that my off the scale hearing was fragile x related. I just grew up thinking I was a freak. I mean, who can hear THAT well? I got in trouble in grade school because the hearing specialists thought I was "faking it" on hearing tests...I could hear frequencies that were incredibly low. My mom had to explain that I was just "made that way".

But I am telling you, I wish my hearing were normal. It causes me sooooo much anxiety. Going to a movie theater is torture. Having POPCORN and people who cannot chew with their mouths closed is guaranteed to make me INSANE.

Let me share a small list of things that driving me nuts (hearing wise):

*gum smackers, crackers and chompers
*popcorn at the movies
*heavy bass in music
*pen clicking (was a real issue for me in school)
*snoring (my dog snores)
*any small constant noise that normal people can hear and dismiss drives ME crazy. I do not possess the ability to filter out meaningless noise. It all comes in FULL FORCE. I don't have a "hearing funnel" like most folks. I get it all at 100%.

Having super hearing is both good and bad. When I get a cold and my ears are clogged, it's like Heaven because it reduces my hearing. I feel what normal hearing must be like....

Jonathan's hearing is like mine....He and I are cursed. Because we rec'd Micaela's diagnosis before her birth, I worked from Day One to reduce her sensitivity to extraneous stimuli. She is MUCH better off than I am. And I am glad for that. Isn't that what all parents want for their kids?

Thanks for letting me share a glimpse into my fragile x world. If you have questions, I am not shy, and I have heard it all. Just ask...... Posted by Picasa


Katie said...

Thanks for this post - so interesting to hear your perspective! It is also a great way to educate people about sensory difficulties (or differences)

Thanks for sharing!

Linda said...

I am constantly amazed when I read your blog - you truly let us into your life and share what we NEED to know.