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May 16, 2012

I’m having a moment.

I’m having a moment where I just hate autism.

I know that many in the autism community would not like me to say that out loud. Because, really, to hate the autism is to hate a piece of my child – a piece of each of my children.

I’m sorry, but I’m not feeling all that politically correct today.

My boy had a rough time at school today. He has a really tough time with win/lose games. When he lost a race at recess today, the other boys taunted him – as boys do. He didn’t like it, but according to his aid, he held it together. Then, one of his good friends said something cruel. He apologized. They are friends again.

This should be the end of the story, right?

But it’s not.

You see, it never is with our kids.

He held it together, just like his therapists have been training him to do. They were so proud of him. He didn’t lose it right there on the playground. He even held it together talking to his at-home aid about it. But something’s gotta give somewhere, and as soon as Mr. S (Troy’s aid) left for the day, the cork blew.

Of course, it was hard for Troy to make the connection between his seemingly sudden rage and what had happened at recess. All he knew was he was angry and, my poor boy, he just wanted to crawl out of his own skin. It was as bad as it’s been in a long time. He was crying, screaming, kicking, punching and clawing at me.

All I wanted was to hold him, but the touch of my hand on his shoulder may as well have been the sharp sting of lemon juice on an open wound. So, I sat and watched him go through it.

I am so tired.

Will this ever end? He’s nearly eight years old. How am I going to handle this when he’s bigger than I am? The half-panicked questions swirl around in my mind as I wait for the storm to pass.

All the while, Joyce has been going through this lovely new sensory phase. She is terrified of the dark, but can’t stand the bright sun, either. She will eat nothing except plain (no spices or sauce) chicken and Lucky Charms cereal lately. She has started gagging on textured foods like mashed potatoes. She seems to be going backwards in terms of potty training, even getting diaper rashes again. She’s 5. I’m starting to think we may never get her potty trained…. We can hardly even go into public bathrooms anymore- the automatic flush toilets are terrifying to her and the hand dryers are just too loud. I’m planning on buying her some ear protection for such outings…. Oh, and she has started slipping out the front door again, now that the weather is nice and the flowers are blooming. Twice today, she snuck out on me.

What happens when I don’t catch her in time?

And then there’s Mary. My precious little Mary. She has to work so hard for everything. She is getting better, but now she’s been fighting this cold, that will likely turn into something worse- seems it always does. She fatigues so easily, while specialists who don’t yet know her try to tell me that intensive therapy would be best for her. She still has very little balance, and topples easily if she tries to play near other kids at the playground. How can she learn how to play with them, if she can’t even keep up with them? And she still can’t talk to me. I know I’m supposed to be patient, but the slow pace of learning to communicate on the IPad is draining me.

I just want to talk with my girl.

On days like today, I feel like a fraud. I try to tell my children that their autism makes them special. That it wires their brains in a new and fabulous way that helps them to understand this world in ways that few other people can. I try not to talk about it in terms of disability, but in terms of ability. I encourage others around us to do the same.

But then there are those days. Days like today, where nothing truly catastrophic has happened.

Sure, Troy had a rough day at school, but it was far from his worst day, and he is upstairs happily eating popcorn with his sisters watching Star Trek in his room. (Yeah, we’re not-so-closet Trekies in this house.) The storm has passed. He is fine. He is better than fine.

It’s those days when there is no major looming crisis, but just that slap in the face from our old friend, Autism. Those days when the enormity of what we’re dealing with hits me all at once. All the questions come crashing down as I am being pummeled, both figuratively and literally, by a rage brought on by a careless schoolyard comment. Those days that I know, my children will always be different. Nothing will ever be simple. They will spend the rest of their lives trying to adjust to someone else’s version of normal. Troy will spend too much of his life just trying to hold it together, until he finds a safe place to let it all go. Joyce will spend too much time avoiding or enduring the sensory overload brought on by something as simple as a flushing toilet. And Mary will spend far too much of her precious energy trying to tell someone to please pass the bread.

I feel like a fraud, because I can’t make that okay for them. All I can do is give them the tools to get through it all. And on nights like tonight, I have a really hard time seeing the upside in that.

Is there anyone that fails
Is there anyone that falls
Am I the only one in church today feelin’ so small

Cause when I take a look around
Everybody seems so strong
I know they’ll soon discover
That I don’t belong

So I tuck it all away, like everything’s okay
If I make them all believe it, maybe I’ll believe it too
So with a painted grin, I play the part again
So everyone will see me the way that I see them

Are we happy plastic people
Under shiny plastic steeples
With walls around our weakness
And smiles to hide our pain
But if the invitation’s open
To every heart that has been broken
Maybe then we close the curtain
On our stained glass masquerade

Is there anyone who’s been there
Are there any hands to raise
Am I the only one who’s traded
In the altar for a stage

The performance is convincing
And we know every line by heart
Only when no one is watching
Can we really fall apart

But would it set me free
If I dared to let you see
The truth behind the person
That you imagine me to be

Would your arms be open
Or would you walk away
Would the love of Jesus
Be enough to make you stay

~ Casting Crowns

4 Comments leave one →
  1. May 16, 2012 12:55 am

    I don’t know what to write other than that I’m sorry.

    • May 16, 2012 12:58 am

      Thanks. We’re okay now. Sometimes Mama just needs to scream into cyberspace for a bit. Things just aren’t always as rosy as we try to make them appear sometimes… Thanks for stopping by. 🙂

  2. May 16, 2012 11:20 am

    You are not alone. Thank you for your honesty.

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