Judging Fish

This post was originally written for Autism Speaks, which you can see on their website here.

The autism world is filled with acronyms, metaphors, and symbols. ABA, IFSP, IEP, SIB, puzzle pieces, umbrellas, and this insight from Mr. Einstein to name a few: “Everybody is a genius.  But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.”

Tree

Preach, Albert.  Want to know what I REALLY think our symbols should be?

Blood, sweat, and tears.

My kids are learning how to function in a world that’s not exactly made to fit their senses or sensibilities.  Achieving acceptance is about having access to services and opportunities they need to effect that learning.  That said, I’ve been reflecting on how doors opened for us and appreciating the hard work of strangers that went into it.

Thing 1 was diagnosed with autism in 2010.  A few months after diagnosis day, we were quietly asked to leave the preschool he attended.  I will never forget the director’s words.  “He’s not potty trained, so he can’t graduate to the next classroom.  I don’t think your son is getting anything out of our program anyway.”  Once we figured out the lay of the land, what we really wanted for our son–a specialized day program for children with autism and intensive behavioral support–was financially unattainable in the state of Virginia.  This was our reality: Thing 1 was not speaking, meltdowns were daily, and by the time he turned five, the only educational option offered was a self-contained kindergarten class.

That was a low point.  Autism was kicking butt and holding my son hostage.

What I did not realize was strangers were shedding blood, sweat, and tears FOR YEARS to make services accessible to all Virginians.  I imagine these guys marching into the General Assembly year after year like Wyatt Earp in Tombstone, never giving up… “You tell them I’m coming, and hell’s coming with me.”

Seriously, who does not love that movie?

To call Virginia’s autism insurance mandate a game changer (recently expanded to cover children through age 10) is an understatement for our family.  It was by no means a free ride, but at least we had a fighting chance.  Thanks to intensive ABA, Thing 1 grew by leaps and bounds and started using words.  BEAUTIFUL WORDS like mommy, daddy, milk, potty, applesauce, no…a whole lot of “no.”  That’s definitely his favorite word.  He writes letters, recognizes sight words, and he can recite any Thomas episode like a champ.

Thing 1 to school

Thing 2, now 4 1/2 years old, was diagnosed with autism last year and also benefits from ABA.  He has friends in an inclusion classroom, he’s an awesome swimmer, and he knows all the Llama Llama books by heart.  This is our reality now: We have healthy, happy boys.  When they have bad days, we have a toolbox of communication and coping strategies to break through the frustration.  It’s like instead of treading water, we have a life preserver.  None of that would be possible without strangers (now friends) fighting for us–pounding the General Assembly and advocating for kids like mine.

Thing 2 snack

I’m looking at April and Autism Awareness Month with more hope than ever because I am excited to see Governor McAuliffe sign autism insurance expansion into law, I am inspired by my boys’ budding personalities, and I am resolved to continue to fight for them.  Tonight we went to Home Depot and bought our blue lightbulbs–for these little lights of mine.

PicMonkey Collage

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