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Chrissy Kelly Headshot

Waiting for a Diagnosis

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Do you know the feeling when your child calls your name so many times in a row that you want to rip out your (most likely unwashed) hair?

Mom, mom, mom, mom, mom, mom, Mom, Mom, Mom, Mom, MOM, MOM, MOM, MOM, MOM???

I don't. But I sure wish I did. I am the mother to two non-verbal boys with autism. I often long to hear the sound of them talking. Don't get me wrong, if they spoke, I would absolutely get exasperated by the repeated calls for mom, endless amounts of questions and constant negotiations. I just want to remind you, that although exasperating, the sound of their voice is also a truly amazing gift. A gift I certainly would take for granted had it had been given to me.

This is my youngest son, Parker.

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He has 100 different smiles, all guaranteed to light up the room. He's a mama's boy, a fact that makes me glow with pride. And each time he chooses only me to soothe him, I feel like I just won a prize.

We love slow dancing in the kitchen while the rest of the word falls away. Sometimes I think every love song was written just for me and him. Those are the moments I know that I've loved him not just all his life, but all mine too. He is my wildest dream come true.

Parker reminds me it's OK to get dirty while you're having fun. Because of him, I don't mind a cluttered house or floor covered with toys. I pick playing with him versus cleaning. Long after he falls asleep at night, I stumble over a forgotten toy on the floor and smile as I think of him. He reminds me it's better to live an honest, painful, beautiful life than someone else's fairy tale. He makes me want to live a beautiful story about a boy with endless blue eyes and possibilities, and a mom that loves so big that it sometimes hurts.

Parker has huge crystal-blue pool eyes that I like to swim in. I stare deep in memorization. Please God, I whisper, Let me remember my 2-year-old Parker. Freeze this moment for eternity and let me remember every detail. The feel of his chubby rectangular feet, his soft, smooth, baby-fine hair, a million different shades of gold. The sight of him playing outside in the backyard doing his funny little penguin run. He makes me stop at least once a day and say, Wow, God. Really? Are you sure it's OK? I can really keep him? And I still really can't believe that my heart made his heart, and because of that it's like we are always together.

I remember nursing him. Our eyes locked on each other and I didn't know where he ended and I began. We were one. And then that eye contact slowly drifted away. I had to get bigger and louder to pull him out from inside his head. And I knew what to look for and I found it, and I knew what it was called.

Last week, Parker had his diagnostic evaluation for autism.

I woke up that morning to gray skies and pouring out rain. God is an amazing storyteller and it was a perfect scene for an imperfect day and nerve-racking day. As far as the assessments go- they weren't so bad. Parker enjoyed himself. Amongst other things, The Wechsler Preschool and Primary Scale of Intelligence (WPPSI-III) assesment was administered directly to Parker. I completed the parent questionnaire called The Childhood Autism Rating Scale-CARS- 2.

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It all looked like mostly playing for Parker and check the box for mom. Knowing I was mainly checking "no" for the things developmentally based on his age that should be "yes," and "yes" for the behaviors he has that fall in line with autism spectrum disorders. My 4-year-old son, Greyson, was diagnosed two years ago with classic autism, and although none of this is new to me, it still provokes pain like the first time, complete with the guilt of being disappointed in the outcome of such a meeting, while never for one second being disappointed in my son.

Unlike Parker's older brother Greyson's diagnosis appointment, the doctor wouldn't tell me on the spot. She said it would come to me through the mail in a written report. I practically begged, If I know, I assume you know. Please don't make me neurotically check the mail every day wondering if this is the day I will open an envelope and fall to my knees. I need to hear the words said out loud. My mother's heart needs to hear it so I can move on.

And although she was kind and a mother, unfortunately she was also not a rule-breaker. He seems to have behaviors and characteristics in line with an autism spectrum disorder, she finally gave me when pressed. We still need to compile all the data first. But he's got a lot of wonderful traits too. I already know that, though, deeply and with even more determined conviction on imperfect gut wrenching days like this day.

I know the doctor's report will call my pot black, and it will leave my heart aching a little. And I also know that today, and even on the day we get the damn letter, Parker is still the same sweet soul whose warm wrinkled body was placed against my bare chest and into my heart almost three years ago.

Parker gives me the opportunity to love greatly. To stand on tip toes and grasp a taste of a love truer than anything I've ever felt in my life. The past few years with my sweet boy have been a love story. Not the kind that you read about in fairy tales, but the real kind of love. It's messy, exhausting, painful, complicated and most importantly so bright and so beautiful that it sometimes hurts my eyes. This is life, and I'll take it all.