Sunday, July 22, 2012

I Want You to Know

Last night, we went to Rudy's BBQ for dinner.  This is a place we enjoy as a family, a place we've been to many, many times in the past 5 years.  The girls love the sausage and almost always ask for seconds of the creamed corn.  They both like to pour their own bbq sauce onto their butcher paper.  They both break their plastic forks at least once per meal.

We had quite the different experience last night, though.  Shannon went to get our drinks while the girls and I went to sit down.  I told them "sit here and I'm going to get the forks".  This is the same procedure that has occurred numerous times before.  However, last night, when I began getting our plastic-wear, I see L walking up to me.  She has tears in her eyes.

"What's wrong, baby?"  I ask her concerned.

"I'm scared" she cried to me.

Scared?  Scared of what?  She never lost sight of me.  She was with her sister.  Her daddy was also within sight of her.  She was in a "familiar" place.  What was she scared of?

I knelt down, gave her a hug, held her hand, finished getting the setup, and started walking back to the table.  She didn't want to walk, though.  She grabbed at me, held on to my leg tightly, and said she was scared again.  So, I held her close to me as we made our way back to our table.

Once we sat down, she buried her head in to my shoulder, not wanting to let go.  I held her for a few minutes and then began getting the girls' plates ready.  (That is no easy task with one hand.)  L continued crying, not wanting to be untouched.

We did what we could to get her to eat as we stuffed our mouths faster than we've ever done before.  She kept saying, "I wanna go home".  It was heart-breaking.  She eventually went and sat on Shannon's lap, wrapping her arms around his neck as K and I finished eating and cleaned up our table in record time.

As soon as we got up from the table, L started smiling and  saying, "We going home now?"  I've never seen her so happy.

What caused this strange situation?  Fragile X Syndrome.  L was experiencing a high anxiety moment, a common symptom of FX individuals.  No matter what we did, nothing could alleviate her fears.  She was out of her comfort zone for a reason unknown to us, and all we could do was to take her home, her safe place.

I tell you this story of last night not because it was a completely uncommon occurrence or something new.  I am sharing it with you because today is National Fragile X Awareness Day and I want to make you aware of what a typical family outing with a child with Fragile X can be like.  I want you to know what Fragile X is, and how it manifests itself.  I want you to know.

Fragile X Syndrome is the leading known cause of inherited mental impairment. FXS is the leading known genetic cause of autism.  It can cause ADD, ADHD, autism and autistic behaviors, social anxiety, hand-biting and/or flapping, poor eye contact, sensory disorders and increased risk for aggression.  Gross motor skills, fine motor skills, cognitive delays ... the list is seemingly endless.

The one thing I know for sure, though, about Fragile X Syndrome is this:  I love my daughter that is affected.  I love my friends' children who are affected.  They are all beautiful, loving, caring people who have taught me more about life than the 30 years of living before knowing about FX.  We have been blessed beyond measure, and for that, I am truly thankful.

For more information, please visit or  Now, learn something new today, and go out and spread the word!

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