Wednesday, April 4, 2012

The word

On April 30, 2009 at approximately 11:15am PST the word, uttered by my son's first advocate, an occupational therapist, came to live with me us.  It quickly boarded the express line from the ether and landed squarely in my our laps.


It wasn't a diagnosis yet (and wouldn't be for another year), but the spoken word corroborated with what my mind had been whispering to my heart for months.
He's 16 months old.  He doesn't walk yet.  He doesn't talk yet.  He doesn't babble.  He doesn't respond to his name, but I know he can hear.  He rolls around the floor shaking, wiggling, and shuddering, vocalizing static.  He spins the wheels on his toy cars over and over and over again.  He watches the ceiling fan for hours.  The wind on his face exhilarates him.  His arms flap up and down, as if at any moment he will take flight.  He sometimes feels unreachable. 
The whole picture of my baby boy immediately came into sharp focus when the word was unleashed.  It made sense.  It validated my instinctual concerns.  It suited him.  And it broke my heart because enveloping this word were feelings of uncertainty, ignorance, panic, and unadulterated truth.  Enveloping this word was my own terrifying fear of inadequacy.

Would I be knowledgeable enough?  Would I be strong enough?  Would I have what it would take to break down the barriers surrounding my boy?  Would I be enough?  Would I unknowingly fail him?

Would I fail him?  Would I fail him?  Would I fail him?

These feelings would sit in the pit of my stomach.  They would fuel my resolve to learn everything that I possibly could, to do everything and anything under the sun in the name of helping my boy.  They would haunt me at night as I rocked myself to sleep those first few months.  They would color every single dream, every nightmare over the course of the next few months years.

Eventually they would scab over and begin to heal, but the wounds would remain ever so tender, and the scars would serve as a constant reminder of the powerlessness I once felt.

My boy would begin to make remarkable progress over the course of weeks and months and years.  With the help of his team of therapists and our family, he would learn to walk, and to look me in the eye, and to share attention with me.  We would slowly and steadily and surely coax him out of his world and into ours, one interaction at a time.  One day, over a year and half after the word moved in, at the age of 3, my boy would speak his first words.  He would begin to communicate purposefully and meaningfully.  His verbal intelligence finally untethered.

He would shine.

The scars layered over those first feelings would begin to fade.  Some days it would appear that they had disappeared completely, vanished.  But then some bump or other in our path would present itself, and like magic the wounds would reopen completely, weeping alongside my heart.  In time they would heal again, but the pattern would persist, the gashes laying in wait, threatening to split at each turn.

But, my boy, he would prove to be the hardest worker I've ever encountered.  He would prove to be the most resilient child I've ever beheld.  He would falter and flub.  He would stumble and slide, but at each and every fall, he would dust himself off, pick himself up, and continue trudging along.

He would shine.

In his example, I would find inspiration.  I would find truth and spirit, and relentless resolve.  In him I would find unexpected leadership.  He would turn out to be the very best teacher I've ever had.  He would guide me and test me, educate me and humble me.  My feelings of inadequacy would melt away as I followed his lead, responding to his lessons, looking to answer the questions he posed with an air of Socrates.  

And so I would learn that bathing and basking in my boy's light would be the key to demystifying the word, autism.  I would learn that living in the space between hope and possibility, that following my boy's lead, would be the answer to removing the scars that once marred my skin, allowing us both to shine.
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April is Autism Awareness month.  Shine a light on this dif-order that impacts 1 in 88 in the United States by learning more about its signs and symptoms.

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Aimee is an educator, wife, and the mother of 3 incredible children.  Sole (11) is a talkative, caring, budding adolescent and advocate.  Micah (8) is a sensitive, quirky naturalist.  Jonas (4) is the beautiful cherub: snuggly, funny, and wonderfully intelligent.  Jonas also has autism.   When Aimee is not writing here, she can be found at her blog Red Shoes, Autism Blues, where she documents her family's rollercoaster journey with autism.