“If I catch you eating in the family room again,” I hissed at four-year old Henry, “that’s the last Cheez-It you’ll ever—wait, what is that sound?”
“You PHONE is ring-ing!” Henry sang out with a smirk. I straightened up and darted into the kitchen, my black bathrobe billowing around me like the Wicked Witch of the West, just as he plunged a chubby hand back into the Cheez-It box.
“Hello?” I answered, wondering who it could be. Aside from Joe and my sister, people rarely call my cell phone. “Carrie? This is Jocelyn. I have some exciting news!” Jocelyn is my publicist. And she never calls me.
I bulged my eyes out at Charlie and Rose, who were coloring together at the table, and made my hideous do not dare talk to me or ask me for a drink or tell me another knock-knock joke because I am on the phone face. They looked up for a second and returned, unfazed, to their markers and paper.
“Yes? What is it?” I asked tentatively. She explained that Fox News called, they read my book and would like me to come to New York and interview with Dr. Manny Alvarez for his show Health Talk. The segment is taped in a studio, covers relevant health topics, and is about six to eight minutes long.
“You’ll want to—“
“Get a new outfit!” I shouted fast. “Maybe a haircut! No, definitely a haircut. Do you think I should get a spray tan? Because last time I did that my feet turned really or–”
“I was going to say you’ll want to bring a copy of your book and some business cards”, she cut in carefully, using the tone one might use when talking to a person who is fighting their way out of a straight jacket. Oh, right. Business cards, sure, that made sense.
I got off the phone, my heart racing. I quickly dialed Joe, but I only got his voicemail. Intrigued, the kids started ask me what happened, who was on the phone. I told them someone asked Mommy to be on television, then instantly regretted it. The way these people share information with the world, by Monday all of Riddle Brook Elementary will think I’m guest starring on Scooby Doo or going to be the next Bachelorette.
What to wear? I rushed to my computer to start some online shopping. They trailed in after me, shouting out ideas. Rose helpfully suggested her denim bejeweled Hello Kitty blazer, just as Joey burst in asking if it was time to go yet. I looked at him blankly. “The movie Mom, remember?” he said impatiently. I’d forgotten I’d bought tickets to see a movie that afternoon. I glanced at the clock and realized we were late.
Quickly I scrambled to get them all out the door. Piled into the Red Hot Chili Pepper, we raced to the theater, bought our giant tubs of popcorn, and I ushered them in. Oh, we were quite the scene; me trying to manage big containers of food and give directions and shush the movie already started, while Henry clutched my jacket and Charlie asked if I could sit near him. I told them to walk ahead of me, and as I followed them in I noticed a young boy wearing a navy blue coat wandering the front rows of the theater. He looked lost.
Just as I stooped over, balancing popcorn and candy and soda, to ask this child if he needed my help, I realized it was my OWN SON, Jack. You know, the very one who has autism and gets disoriented and overwhelmed and sensory-overloaded in large movie theaters with big screens. I reached down to tap his shoulder and spilled an entire bucket of popcorn everywhere as he started to shriek.
At long last, we found six seats together, and I slunk down in my chair, sweaty and popcorn-less. I could barely focus on the movie—it was something about blue aliens darting from one planet to another in their spaceships. The female aliens had absurdly small upper bodies and round, pear-shaped hips. Or maybe it was just the dresses they were wearing.
Dresses. I started to daydream about the interview. Should I wear a dress? Or maybe something smart, like a snappy blazer? I wanted my outfit to shout she’s fun! Yet relatable! Not to mention young. (I realize this may be too much to ask of a single garment.)
My mind wandered back to the movie; it seemed to be a story of two blue alien brothers, one who was strong and popular, the other weak and brainy. The message seemed to be about typical versus unusual, with the underdog trying hard to triumph.
Message. I started to think about what on earth I was going to say during this interview, what my own message would be. I had no idea. Nearly every day, someone asks me what the book is about, and I still stumble over an answer.
I looked down the row at my five ducklings as they sat absorbed in the movie and I watched as, without moving his eyes from the screen, Charlie silently offered Jack an M&M in exchange for a long drink of lemonade. Henry and Joey were munching out of the same bucket of popcorn, occasionally brushing their buttery fingers together. Just as I turned away, Rose caught my eye and gave me her winning smile and a quick thumbs-up.
And in that moment, my message began to take shape in my mind.
The book is about our journey to a diagnosis of Autism Spectrum Disorder with a two-year old Jack, and how every single day since Joe and I have fought to help this boy reach his full potential, from sitting through a meal to learning how to figure out how many termites measure an inch and when it’s okay to ask someone how old they are. (Never.)
It’s about a tall, skinny nine-year old coming to terms with having an unusual brother, a brother who holds up the school bus with a tantrum and gives big bear hugs when they pass in the hallway. Who is sometimes called weird on the playground.
I’d like to talk about the pure magic of listening to five kids having a dance party in the playroom, hearing them laugh and shout and jump to the beat of Gangman Style; come on Jack you’ve got it go side to side.
I hope I get the chance to explain how autism is so much more than a label or a diagnosis. It’s more than the rigidity and anxiety and the oh you mean like Rainman. It’s the sweetest little 8-year old boy you’ll ever meet; a little boy with knobby knees and a fondness for marshmallows, and who knows how to say please in Farsi.
I would like to say yes, Dr. Manny Alvarez, there are dark days; days when Jack is gripped by anxiety so powerful he can barely use the bathroom or ask for more milk without faltering beneath the weight of his fear, endless days of distress over sexy pancakes and singing the same song again and again. Days of why me, why him, why us.
But there are also days of bright sunshine, when his dazzling progress is almost too much for my heart to hold. Days that start with good morning Mom in a familiar clipped tone and end with a taste of slippery lasagna at dinner. And these days are like my guideposts towards the light at the end of the spectrum tunnel. They make the fight worthwhile.
As I relaxed back into my seat, I thought once again about how I should dress, and I decided I would wear what I always wear when I talk about my family and Jack and autism: my heart on my sleeve. It matches everything, even a Hello Kitty blazer.