Autism is just one color on the rainbow

27 Sep

I am doing an autism walk with and for Oli tomorrow. Because of that, I have been thinking a lot about what autism looks like and what it means in my family.

Oli was diagnosed with autism 3 years ago.

She was diagnosed by a team of specialists who specifically look at the differences between autism and blindness because they can appear on the outside to have shockingly similar behaviors.

Flapping in a typically developing sighted child is not part of normal (and I use that word loosely of course) development.

Flapping in a typically developing NON sighted child IS part of development.

A child speaking with echolalic patterns is not normal in a typically developing, sighted child.

Echolalia can be normal for a blind child.

Speaking, followed by a sudden lapse into being completely non verbal over a period of a few months, that is not caused by anything neurological…is NOT NORMAL in any child blind or sighted.

Yet this is exactly what my child did.

This is what led me to seek further answers by a team of specialists in Philadelphia.

This, along with other things, is what led to Oli’s diagnosis of autism.

So…there I was…3 years ago…raising a child with no vision, no language, and no way of communicating with me…

I was devastated.

This is the thing that kept running through my head,

“She can’t see. She can’t speak.”

Can you imagine, as a mother, what that feels like?

I had to face the reality that #1 Oli was never going to meet my gaze. She was never going to look into my eyes or look at me at all. I was never going to be able to look into her eyes and see an unspoken emotion that might lie hidden there. I was never going to be able to discern ANYTHING from her eyes.

And #2 Oli may never speak. I might never hear “I love you” roll off of her tongue.

(Granted, I might never hear the words “I hate you” either, spoken from the angst filled heart of a teenager, but that’s a different blog topic.)

Trying to explain this sadness to my family and friends was and still is difficult for me.

Most of them, when I do try and talk about it, respond with “Yeah but what if’s…” or “Yeah but it could be worse…”

They are right.

But it doesn’t make me feel any better.

I would rather hear “That must be hard” or “I’m sorry” or nothing at all.

I have found that the majority of the times that I do speak about the sadness, I do it NOT looking for answers to this problem. I am not looking for a solution to fix my heart. I am looking for an ear just to listen. I am only looking to get it off of my chest and express my sadness in words rather than bottle it all up inside and never speak about it. Which is what I did when she was born. I would rather tell you about it and leave it out there on the floor for those 5 minutes than carry it around with me for the next few days or weeks.

I know that Oli’s blindness is never going to be fixed or cured and it will never even improve. It just won’t. That’s life. That’s reality.

It took me longer to accept the fact that her autism will never be fixed or cured and it may never improve either.

But the truth is that it does not matter what label she has or what diagnosis she is given.

It doesn’t matter if those horrible evaluation histories label her as “Globally developmentally delayed” or “Autistic”.

It doesn’t matter because she still receives every possible service that would be available to her through either diagnosis.

And it doesn’t matter to me because that label says nothing about who she IS as a person. It may make her act a bit different on the outside. It may make language more difficult, but it will never define who she is as a person.

Just like the blindness will not define her.

It just won’t.

It took me a long time to figure that out too.

So today autism means less to me than it probably does to other people.

Autism for Oli is just one more color on the vibrant rainbow that makes her who she is on the outside.

But it can’t even come close to touching the spectacular kaleidoscope that she is on the inside.

Advertisements

One Response to “Autism is just one color on the rainbow”

  1. ksbeth September 28, 2013 at 2:33 am #

    you just can’t keep her beautiful colors from shining through no matter how she is labeled. )

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

thecrumbdiaries

Logan is challenged but not limited, and he is living his life like a boss. I am just lucky enough to be along for the ride.

Mommy Got Her Groove Back

How a new mom, and wife does parenting and daily life.

The Formerly Hot Housewife

weight loss, healing, and new self discoveries

Lessons from my daughter

Although all doctors agreed she would do nothing.....

I'm fine, but my Mommy has issues!

Raising a daughter with special needs.

Living on the Spectrum: The Connor Chronicles

Our family's adventures in the world of ADHD and Autism.

Parenting And Stuff

Not a "how to be a great parent" blog

don of all trades

Master of none...

The Third Glance

A peek into my (Autistic) mind

One Stitch At A Time

Making my way back in time.

Mom Rants and Comfy Pants

Ramblings From a Veteran Mom Who Hates Skinny Jeans. Ever Feel Like You're Swimming Upstream?

Disability Watchdog

Exposing Injustices for Vulnerable People

My thoughts on a page.

Living, Laughing, Loving, Loathing.

It is Well...with my Soul

Sure, my hands are full. So is my HEART!

Chopping Potatoes

And other metaphors for motherhood

This is the Corner We Pee In

Bulletins from the Parenting Trenches...

clotildajamcracker

The wacky stories of a crazy lady.

This is the place

visiting places where writers were born, lived, loved & are buried.

motherslittlesteps.com/

Motherhood and Coastal Living

%d bloggers like this: