Saturday, April 2, 2016

On World Autism Awareness Day

It is my family's first World Autism Awareness Day.  But I'm not lighting it up blue.

In a way, it seems strange that this is the first time we're a part of this day.  It feels like autism has been a part of lives far longer than 10 months. But that's because it has.  It's been a part of our lives for 4 1/2 years.

What I wish parents facing diagnosis, avoiding diagnosis, or dealing with a recent diagnosis could realize, is that a diagnosis doesn't change their child.  We have only officially been an autism family for 10 months, but we have been an autism family since the moment my oldest daughter was born.

From the moment they placed her in my arms at a couple hours old, and she didn't lock eyes with me, we were an autism family.  My first acknowledgement of it came standing next to the changing table when she was nearly 8 weeks old, telling my husband "no one told me she wouldn't pay any more attention to me than she does to a wall.  It's like she doesn't even look at me.  I'm just an object."  First time mom, I didn't know that not all babies were like that.  I thought people had just made up that magical moment of your newborn gazing into your eyes.  Until I experienced it just 11 months later, when my second daughter was placed in my arms and opened her eyes and looked at me.

I still feel like an object.  I commented recently, one early morning as she ran right past me to retrieve her blocks, "I'm just the thing that opens her door."  Every night we hug and kiss and say "I love mommy" because that's our bedtime ritual.  But it's motions, obedience.  Tiny arms entwined around my neck squeezing tight?  That comes from the younger two.

Does she love me?  Probably.  In her own way.  And that's the way it is with everything.  She does things in her own way.  In her own time.  It doesn't fit anyone else's definition.  It doesn't fit anyone else's timetable.  She makes her own lines, and then colors in them. She has her own world, and it doesn't really line up with everyone else's.  She's a square peg in a world of round holes.  She marches to the beat of her own drum.  She sings in a key all of her own.  Loudly.

So why no blue?

For one, my daughter is just that... a daughter.  A girl.  And continuing to focus on autism being a blue diagnosis, a boy diagnosis, is a disservice to the many girls who struggle.  Girls hide the symptoms better, and normal boys can sometimes be misdiagnosed by untrained doctors whose ideal boy is a girl.

But the biggest reason is that the organization behind Light It Up Blue is focused on finding a cure.

My daughter does not need a cure for her autism.

A cure for the Chiari.  Absolutely.  Please. A cure for the Crouzon Syndrome.  I'll take it.

But leave her autism out of it.

She's not disabled by autism.  She just thinks and processes differently.  And thank goodness for that.
She's intensely logical.  She could care less whether the snow likes her or not.  She asks why it's funny to throw whipped cream in someone's face. She finds patterns, sees the world in numbers, and she is not going to be hoodwinked by a politician who sounds good but has no numbers to back him up. Different perspectives are valuable.  Why would I want to "cure" that out of her?

So I don't "feel" loved by her.  So what?  Love is so much more than a feeling.  She reminds me of that every day.  She does not inspire warm fuzzies in me.  Trust me, when you're dealing with a child having a meltdown, or covered in feces at an age long past the cute butt stage, there are no warm fuzzies.  But love is an action.  It is fixing food, putting it on the correct color plate, cutting it in the correct number of pieces.  It's learning to turn socks inside out so they don't feel "tight" on toes.  It's building an indoor treehouse so she has a place to be alone.  It's correcting speech over and over until strangers can understand her. It's protecting her routines.  It's fighting for medical care.  It's analyzing MRI's and CT's, changing bandages, educating nurses.

It's being okay with the first morning greeting you get being: "Elephants live in Africa.  Africa is a long way.  I'll fly in my purple rocket ship all by myself to Africa to see the elephants.  There are chips and vegetables in my rocket ship.  Cucumbers are vegetables.  I'll use a knife to cut the cucumbers into ten circles.  I'll be careful with the knife.  Eh eh eh elephant.  Elephant starts with E. Fff ff ff frog.  Frog starts with F. Ggg gg gg G.  What starts with G?  Grape starts with G.  I like grapes.  Can I come out and eat grapes?"

It's looking at this brain and simply marveling at the way it works. Even if it doesn't work quite like your own.