More Than Autism
A lot of times people ask me to describe you, but I’m never sure what to say.
You are fierce.
Forgotten amidst the throngs of baseball uniforms threading their way to a green, green field.
Cheering on the game in cold metal bleachers, no one remembers the boy who does not play.
The boy who sits home on a red beanbag chair, uncertain and alone,
too scared of the announcer’s booming voice to venture outside, and see the ball fly.
You are forgotten amongst the bright lights of award ceremonies,
and tuxedo prom pictures,
and graduation diplomas.
See, while others stand in the light,
you crouch in the dark,
and watch from the shadows,
as life unfolds before you.
How to honor you?
That is the question I turn over and over,
like a penny in the palm of my hand.
How do you honor a person who overcame his fear of dogs?
And learned to manage a bite of chicken pot pie?
And finished a math worksheet in less than an hour without screaming?
There is no trophy for memorizing the running time of every Disney movie,
or going to school all summer long,
or trying a new food at the dinner table.
There is no prize for the courage it takes
to live in a world of sameness, when you are different.
There is no award for autism.
You are a brother.
You are my son.
You are my sun.
At times, you burn me with your bright hot anger.
Then you warm me with your tentative smile.
You are the tympani of my sleepless nights.
And the rhythm of my waking days.
You are my heartsong.
All day long, we tell you.
Do it our way.
Not your way.
Learn this way.
Not that way.
Be like us.
Not like you.
You are wrong.
We are right.
You are less.
We are more.
You are a number, a statistic—a brightly-colored slice of the pie chart.
One in sixty-eight.
Or is it one in fifty-two?
You are the child for whom everything must be explained.
The covert made overt, the secret turned obvious—the mystery solved.
Buddy, let Aunt Sarah sit next to Uncle Angelo at the table.
No, Jack, we don’t tell the server she made a big mistake because she forgot your root beer.
See my face? I am angry right now, Jack-a-boo.
You are a paper boy, made of static, calm words on a page.
The letters do not breathe or move or change,
but they will follow you for the rest of your life, miniature ants at a picnic.
Autism Spectrum Disorder.
Diagnosis and child so closely intertwined, as to seem inseparable.
Yet you are.
Able to be separated.
If I simply look long enough.
If I wait, and I watch, and I wonder, I will see.
Because just when I am certain there is only black-and-white,
the color of you rushes to the surface.
You are a one-arm hugger,
and a surprise dog lover.
At first, an infant who screamed and writhed in my arms.
Then, breathless chasing beneath
yellow fluorescent lights in a nameless store.
Under tables, around chairs, behind shelves piled high with sweaters.
Stop, Jack! Wait!
Then, sixth grade.
Angry, sad, depressed, confused, bewildered.
Now, fourteen. Better.
You are shape of a man, with the heart of a boy.
Where will you go?
What will you do?
Who will you be?
You are an uncertain future, unfolding as we speak.
Are you lonely?
Are you scared?
I am lonely.
I am scared.
You are every parenting mistake I have ever made.
The times I yelled,
and clenched my teeth until my jaw ached.
The moments I cursed your autism,
and vehemently wished for a different life.
The minutes I longed to take back,
and do over again.
You are funny.
You are honest.
You are brave.
You are more than autism.
September 17, 2018 @ 11:24 am
Love you Carrie?
September 18, 2018 @ 10:33 am
Beautifully written, Carrie. My son is 8 now, and I think about these things a lot. All children deserve to be honored, celebrated and remembered. Thank you for sharing your heart with us moms and dads who are struggling with similar situations. You are truly a light!
September 18, 2018 @ 8:31 pm
So beautiful. Your words. You. And, most definitely, your son. I wish l knew you both in person.
September 25, 2018 @ 8:28 am
This might be my favorite piece you ever shared. THANK YOU, as always, for saying what I am sometimes unable to put into words.
Beth Brown Johnson
October 8, 2018 @ 9:39 am
This. You are writing my thoughts. Does he hate that we want him to do things our way? Is he lonely? What does his future hold?