Tuesday, September 2, 2014

The Facts

My initial response is to write the facts.

It's always the last paper in the pile.  Behind the registration card and the emergency contact card, behind the PTA enrollment form and the school policies page.  It's the "About You" questionnaire.  The "Getting To Know Your Child" worksheet.  

What is your child's favorite food?  What are your child's hobbies?  What would your child like to be when he grows up?  

Absolutely, I have an idea of what I could write on those blank lines.  I am Camren's mother and know him better than anyone else.  There are certain things Camren likes, and there are certain things he does not.  But the truth is, I don't really know all the answers to these things because he's never told me.  He can't tell me.  Not entirely.  And what I wouldn't give to be able to unlock that mind of his, to see the answers for myself.  Verbal language--something that frequently alludes him--is the key to discovering what's inside.

So I do my best.  I answer the questions.  I feel fairly good and confident about my answers.  And then I see the last question:

What else would you like us to know about your child?

My initial response is to write the facts.

In August of 2013, James and I met with a psychologist in a small exam room--furnished with a child-size table, brightly colored chairs, and several bins of toys--and watched as he administered the ADOS test to our son.  We were strangely calm and hopeful, despite being fully aware of the ominous presence in the room.  It sat on our shoulders and whispered in our ears:  Autism, autism, autism.  And when the psychologist uttered words like, "spectrum disorder," and "Asperger's," we did not flinch.  

Since that day, we have read pamphlets, print-outs, and books.  We have met with school teachers, speech therapists, and pediatricians.  We have sat side-by-side through IEP meetings; sobering experiences that simultaneously fill your heart with peace and pain.  Last spring we spent a day at a disabilities conference, learning about how to best support children with special needs. 

Camren and I have spent hours together in speech therapy--playing Memory to learn proper nouns, engaging in ring tosses to learn action verbs, reviewing flashcards depicting various emotions and helping Cam to identify them.  We've had months and months of occupational therapy, where we've been introduced to the life-saving wonder of "joint compression" and the joy of "plastic ball pits" for sensory integration.

Sensory integration.  My vocabulary contains words like, "sensory intergration," now.

My initial response is to write the facts.  But in a moment of freedom and unapologetic defiance, I say to hell with the facts and the diagnoses and the labels.  My son is not "the facts."  He is not his diagnosis.  He is not a label.

What else would I like you to know about my child?

He is hilarious and charming--with a gappy smile so cute it knocks you off your feet when he flashes it your way.  He is delightfully quirky.  He is stubborn and smart.  His mind absorbs everything; his laugh defines joy.  He is full of surprises and his brilliance is astounding.  Look into his dark-as-night eyes long enough and I promise you'll see stars there.  There's wisdom and depth in there, too.

I can't tell you what he wants to be when he grows up--what his aspirations are, what constitutes the stuff of his dreams.  He's a little boy on a journey, with a long way to go, but I will tell you this...

No.  I will promise you this...

He will be amazing.  


Friday, August 22, 2014

The Things That Ring

In July I had the wonderful opportunity to travel to San Jose for the tenth annual BlogHer conference.  (Side note:  The city of San Jose was a pleasant surprise, with lots of palm trees and architectural charm!)  From the ride to the convention center with the Ukrainian cabby, to the shirtless, homeless, delightfully quirky dude asking me if I was Keith Richard's wife (say what?), I knew I was in for a treat!

At the conference there was an abundance of good food and awesome swag.  The classes were informative and inspirational.  People were kind.  And holy moley, talented and creative women were everywhere!! 

In the midst of all the parties and workshops--the late nights and the early mornings, the motivational discussions, the laughing and socializing, and dancing with Rev Run--I learned a few things.  Relevant maxims applicable to bloggers and non-bloggers alike; things shared by women and for women to embrace.  Adages that struck a chord and rang true to my soul:

#1--Self-pity is for suckers.
#2--Don't be mean.
#3--Everyone has a story.
#4--Have passion.  Do the things that bring you the most joy.
#5--People are valuable.
#6--Your words mean more than you could ever know.  Choose good ones.

Words matter.  And these are my words, my friends.  The ones I choose to share with you when my small corner of the world is filled with light; the ones I choose to share with you when I am depressed by life's dark clouds.  Like a well-loved book with a spine that's cracked, I open myself up to you over and over again.  With sincerity.  With humor.  With love.  With a knowledge that you are much like me:  Seeking joy, facing pain, working hard, loving fiercely, fighting in trenches, shoveling discouragement.

Why do I do it?  Because someone in San Jose thinks I might be Keith Richard's wife!

But mostly because of #3.  And #4.  And #5...