Archive for December 30th, 2007

Pondering

Matty curled up to me last night, covered in pizza sauce, and grinning from ear to ear.  I was on one end reading a book so he layed down on the opposite end.  He lightly touched my leg under the blankets I’m always buried under.  It was his gesture to me that he wanted under them too.  I scooted my leg over just enough for him to squeeze his little frame in between the back of the couch and my legs.  It wasn’t long before his body felt like dead weight against my legs.  He had fallen asleep.

He looked so perfect in that moment.  I began thinking about how life would have been different if he was normal.  Not in the sense of how his life would have been different but mine. 

I would have never known much about fragile X or autism.  I wondered how I would treat individuals with developmental disabilities today.  In stores, would I send disgusted glances towards a mom struggling with her children or sympathize like I do know?  When a DD child rubbed his hands down my very dirty car would I gross out at his dirty hands and get angry for the finger smudges on the paint?  What if a DD child started rubbing my arm while also looking away?  Would it creep me out?  Would I push her away?  Would I veer away from them when I saw them walking down the sidewalk towards me because they were drooling and chewing on their hand?

Though I truly wish that I would react in a good way to all the situations, because I was involved in Special Olympics and teaching Downs children to read before I had my special children,  I can’t say for sure.  I can say for sure that I am very happy that I will never have to worry about answering any of those questions.

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6 comments December 30, 2007


Autism & Fragile X

C’est Moi


Overly happy, married, working mom to 4 kiddos. This is our journey while working with fragile x syndrome.

Who are these people?!

all names changed to protect our family
  • Kevin ~ dad
  • Beth ~ mom & fragile X carrier
  • Lauren ~ 17 & in 12th grade
  • Austin ~ 14 & in 9th grade
  • Matthew ~ 13, in 7th grade, has full fragile x mutation, and autistic tendencies
  • Rachel ~ 10, in 5th grade, has full fragile x mutation, and autistic tendencies
  • Theresa~ Beth's best friend since 6th grade & her biggest supporter

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