Tuesday, September 11, 2012

She has the most beautiful voice.

Today was tough.  In addition to being an anniversary of a national tragedy, Sophie stayed home sick.  One of the toughest things about raising a child with autism, is the difficulty found in communication.  Sophie has some speech.  She reads, she asks for things, she sings, she engages in echolalia (this is where she repeats lines of dialogue from tv or conversation) but she can't tell us what ails her.  She had a fever today but we can't figure it out what hurts.  Imagine this....we have to learn how to make educated guesses.  But we keep trying.  Anyone with a child on the spectrum knows that there are extremely euphoric highs to tearful devasting lows.  

When you are a parent of a "typically developing" child,  it is normal to think and worry about what the future holds.  When you have a child with special needs, those fears can be downright petrifying and crushing.  I find you need to learn how to live moment to moment, day to day, and triumph to triumph.  You can get lost in a sea of despair with "what if she doesn't ever......" or "other kids can be so cruel" or get lost in the stares of other parents wondering why your kid is acting up.

But guess what? She has come so far.  Eye contact, her speech, and her spirit has increased dramatically over the past year or so.  People have said my endeavor inspires them ; however what I am doing is nothing compared to the mountain my daughter has to climb daily. She is the real inspirational figure here.  I'm doing a physical and mental challenge that will last 7 days.  She is fighting every single day.   She doesn't get a day off to be sore and regroup.   She didn't elect this life.  Her character and perservance is downright amazing. She is a fighter!

Finally, I must say that I know that there are kids out there who suffer from unimaginable hardships with life threatening conditions.  There can be nothing worse.  And I don't pretend to understand this because Sophie is a healthy child.  I am very grateful for this.

Quick story...we went to the Metro Richmond Zoo.  Sophie was doing really well and having a blast.  We passed a monkey cage and I said "look at the monkey" .  Sophie informed me  "orangutan"!  That will teach me to underestimate this child.  


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