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  • Writer's pictureSusan

#7: Upside Down

Everything is upside down. Ten days ago we were a typical American family: husband, wife, two kids and a dog. Society’s definition of “normal”. Except we weren’t. We just didn’t know it yet.

Now we know, and everything is upside down.

I’m in the kitchen washing dishes, thinking. My head hurts from the endless thinking. The crying. The internalizing.

I haven’t told many people about the diagnosis yet. Just immediate family and a couple of close friends. I can’t handle the questions that may come. The same questions I have myself. Questions with no answers.

And what do I even say? What words am I supposed to use? “My son is autistic?” No. I won’t put that label on him. I can’t let him be defined by the diagnosis. He is so much more than that.

I feel my inner warrior rising up. Anger at the thought of anyone labeling him. Pre-judging. Putting him in a box.

E may HAVE an autism spectrum diagnosis; that doesn’t mean he IS the diagnosis. His identity will not be rooted in a label. A label we never asked for. Not if I can help it.

E is on the floor nearby, playing with his Legos while I wash the dishes from dinner.

Tears sting my eyes and mingle with the dishwater. One minute a warrior, the next a weeping willow.

Memories of junior high flash through my mind. Always being chosen last when teams were picked for dodgeball. The studious, shy girl – not the fast or athletic one. Junior high kids can be so mean with the labels they assign. I let it define me for years. I can’t let that happen to my son.

“I don’t know where to begin with him, God,” I pray silently. “How do we help him understand, but not let him be defined by a label? I don’t want to screw this up. For his sake, we CAN’T screw this up.”

Before I formed you in the womb, I knew you.” Goosebumps. I pause, turning off the water.

Before you were born, I set you apart. I appointed you.” Instinctively I look over at E, still playing nearby. This message is for him.

Do not be afraid, I am with you.” I know these words. Words from the Bible, from Jeremiah. Words my Dad read to me as a young girl struggling with self-worth, with identity.

Words that take the upside down and make it right side up again.

That’s it. That’s the answer. My job is to teach him that he is unique. Loved. Chosen. Whole.

That his identity is not rooted in words from a doctor, but in words from God.

And it has to start now. In just a few months he will start kindergarten, and a lifetime of labels will begin. But not here. Not yet.

Drying my hands, I hang up the dish towel and join E on the floor of the living room.

“Buddy, look at this little car,” I say, holding up a blue Lego. I’m in his space, holding the Lego in his line of sight.

“Block,” he says, without taking his eyes off what he’s building. “Blue block.”

“But I think this is a car, E. Can’t this be a car?”

Predictably, he is getting agitated. “Block, Mommy,” he insists. “No car.”

“Well, what if Daddy thinks this is a car, too?”

He’s escalating. “No car! Block! My block!” He grabs the Lego from my hand, face red.

I need to interrupt this cycle before he goes into a full meltdown. “Okay, buddy. Block. It’s a block. You’re right.” I rub his back gently, trying to calm him.

“Mommy was being silly, wasn’t I?” I smile, willing him to understand the message. “I called that a car, but you know it’s a block. You’re so smart, buddy.”

He’s not responding, but my answer is pacifying him. I can see him de-escalating. Breathing slower, relaxing his grip on the blue Lego.

This is a message – and a lesson – we will need to repeat again and again, in multiple ways. He has to get this.

We need to get this message, too. My husband and me. Now. Before we start sharing more broadly the news of E’s diagnosis.

The temptation will be to fall into self-pity. To accept the inevitable “condolences” of well-meaning friends and, whether consciously or subconsciously, trap ourselves in a victim mentality. The “woe is me” syndrome.

We can’t. We can’t make this about us. Self-focus is simply blinders for humans. We can’t be blind. He needs us.

Yes, we are grieving. Our dreams feel crushed. We don’t know what’s next.

But I know my son. I know he is loved. I know he was born with a purpose.

A big purpose.

For this moment, that is enough to make everything turn right side up.

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