Once Upon an Autism, Not Your Regular Fairy Tale

Behind Butterfly Eyes

Posted on: January 21, 2011

That faraway, soft expression… Many of those who have autism have what my mom fondly calls “Butterfly eyes”. And by no means, is it an insult. They all have this dreamy expression their eyelashes fluttery. Sheesh, I’m supposed to be the writer but now I cannot grasp the words, but when it comes to my son, I want to do him justice. He is my drive, my muse, and the love of my life. He’s my special little (well not so little, he’s almost as tall as me) friend.

I’ve heard the comments, not so much now, as he has progressed, that when he’s had the faraway look, that the lights are out and no one is home. Nothing could be further from the truth. I don’t care how “low-functioning” a child with autism is. A lot more goes on in their minds than a person could possibly imagine. Just because they don’t respond does not mean they do not understand you. Many parents end up mortified to find out that they’ve said things in front of their children when they presumed their child was off in their own world.

There are times Nicky will say, “Mom, do you remember when I was five and you said….” And I will look at him in amazement because what he recalls is so vivid, he can sometimes remember to the slightest detail as to what lip gloss I was wearing. Just because they don’t appear to be paying attention, doesn’t mean that they aren’t.

I don’t view autism as a disorder. Not entirely. One specialist summed it up rather nicely. They file things in their minds a bit differently than we do. It doesn’t make it wrong, just different, just more of a challenge. I’m honored to say that he has he entrusted me with some of his secrets. He views the world differently. He’s not hung up on so many gray areas like the average human being is. He is able to find beauty in places where other eyes would even neglect to look.

My little butterfly doesn’t have a disorder, he just files things differently than what is considered the norm. And where is the wrong in that? He can find a simple peace an solace when he rocks to music. I myself, can’t handle not listening to music. Perhaps the people who don’t get lost in the music, the people who don’t get lost in their daydreams, are the ones with the problem? I was always a bit of a daydreamer myself. It’s why I love to write so much.

How do we know that some of our greatest poets and artists haven’t been autistic? We don’t know.

Granted, those with autism have some interesting traits, varying from rocking, hand flipping, to reptetitiously opening and closing doors. But it certainly isn’t evil.

Oh, it was tough when I had to tie down furniture down when my little butterfly would try to slip out in the wee hours of the icy cold mornings, but that’s before I had a grasp on what was going on.

Once I knew what was going on with the little guy, I had a better idea of what to do with him.

I’m not going to tell you that Autism is an easy situation to deal with, but once you have fully accepted it, you embark on a journey that not many people are privvy to.

My case and point? Nicky loves music as much as I do. When music is played, hi expression grows dreamy and he rocks to it. One day, when Nicky was younger, my mother watched him for a bit, gently took his hands, and rocked with him. His faraway look turned to one of pure joy. She joined a part of his world. Neither spoke, they just swayed to the music together, both smiling and communicating in a way that mere words cannot explain.

I’ve rocked with Nicky, the joy on his face is difficult to describe for rather than trying to pull him from his world, I am joining his and it’s a beautiful place.

The respite company I used to go through did nothing but criticize him for having imaginary friends. They, along with the social worker, told me that I needed to discourage that behavior. My intuition always told me that ripping that away from him would do more harm than good. So he and I came up with a compromise. He would leave his imaginary wife, friends, and kids with me whenever he had to go to places that frowned upon it. I made promises that I would take good care of them while he was gone and of course, I would have to make up something interesting he knew imaginary family wasn’t bored. I take care of all his imaginary friends, wives, children, and pets when he isn’t allowed to take them with.

I think it’s stupid, there are man “normal” kids who have imaginary friends and social services don’t get their undies in a bunch over that. But, I am in a touchy situation because I am a single, disabled parent, so there are certain hoops I have to jump through.

He doesn’t have any real close school pals, he is close to the family and his imaginary family and yeah, I encourage it. I encourage him to use his imagination. It’s a lost art on children nowadays.

One thing that angered me was that his former psychologist stated his IQ in front of him. I could have cheerfully bounced her on her head. My brothers and I have very high IQs. I won’t say what mine is because it does me no good. For a very long time, Nicky dwelled on the fact that he had a lower IQ, and it upset me a great deal. He thought it meant he was stupid. I pointed out that other family members had high IQ’s… and pointed out that they weren’t all that successful in life. I told him it wasn’t going to be his IQ that would determine whether he would be a pathologist or not, I told him it was what he learned and how he applied it to life.

I told him his IQ didn’t decide on whether he was a special person or now. I told him it was the size of his heart that decided that how special he was. I told him it depended on how he treated people. I told him THAT was what mattered.

He wants to be a pathologist. I told him he needs to do his best. Personally, I see his talents lying more in drama, writing, artwork, or working with others who have special needs. But I will not discourage what he wants to do. If my little butterfly wants to deal with blood and guts, I’ll be as proud as heck of him. He wants to join drama and I do hope that he’s ab;e to join because he is a ham.

But back to the first subject at hands, what you may see in those vacant butterfly eyes, may be a mountain load of information. They may not be able to express it! Never underestimate the power of our butterflies.

9 Responses to "Behind Butterfly Eyes"

Good stuff! My kid will be 9 on Tuesday, I wonder what questions he’ll ask me when he’s 13.

Nicky asks about the birds and the bees, I explain it very calmly, and he wants to wait until marriage, I must be doing something right.

I prefer to think of it as “the lights might be out but they’re still in there.”

I believe the lights are on, but there is a veiled mystery there. Autism is such a mystery.

Awesome blog Tracy.

I have to admit something to you, but I think I told you already. But reading ur stuff makes me really think about Racers future. He’s still so much in the baby stage and I’m right there with him. I dread what its going to be like when he’s older. I haven’t even considered what I wud say when I tell him he has autism.

You’re a good mother. You’ll do fine.

I join C in his world often – we rock we stim, we eeeeek!

If we understood all that was going on from their perspective we would never use the term LF.

Great post, Tracy.

As an autistic adult, I must admit it’s both strange and difficult to read some of the viewpoints from the outside. It’s as if we’re an alien race, being studied, prodded, poked, and ultimately defined by people who aren’t us and know nothing about us. They couldn’t be more wrong when they say “the lights are on but no one’s home”.

What you’re describing here is what we often refer to as “Othering”. As in, “these autistic kids are not neurotypical kids, so they must be Other”. Therefore, everything we do or say is seen through a giant prism of autism, and the rules are completely different. A neurotypical person has a “passion”, an autistic person has an “obsession”. A neurotypical person’s imaginary friends are a normal part of growing up, an autistic person’s imaginary friends are a psychosis to be quashed. Same with self-stimulating behaviours. Etc.

But people (particularly our parents) seem to forget that we’re also human beings. Individual human beings with individual traits. And being human means that we do things other humans do, too. We feel love. We feel sadness. We feel pain.

Sorry.. I could go on and on and ON, but you get my point. I think you’re doing a great job here, Tracy. You’ve got a wonderful attitude. Kudos to you.

(to anyone else who may be wondering – I’m both an autistic person AND a parent of 2 autistic children, one of whom is non-verbal but extremely intelligent 🙂 )

Thank you for your comments. Because what you say IS true. Nicky feels things very deeply. He’s very emotional, and he likely gets that from me. And I’m (ha!) normal.

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

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Join 16 other followers

Twitter Me?

Error: Twitter did not respond. Please wait a few minutes and refresh this page.

%d bloggers like this: