Monday, April 22nd, 2013
Author Carrie Cariello is a mom of five, including one 8-year-old boy with autism. So others will understand autism more clearly, she recounts her wondrous and challenging journey in her new memoir What Color is Monday? How Autism Changed One Family for the Better. Thank you, Carrie, for the eye-opening guest post below:
“What color do you see for Monday?” my son Jack asked as I heaved a chicken into the oven.
“What?” I said distractedly, turning from the oven to slice some potatoes at the counter. It was late afternoon one day last fall, and I was preparing dinner and managing the demands of homework and tired toddlers. (One was in a tiara.)
“What color is Monday?” he asked again, his robotic voice rising ever so slightly in irritation.
“I don’t see Monday as a color. Do you?” I asked, finally tuning in to what he was talking about.
“Yes. All days are colors.”
All days are colors. On a seemingly ordinary day, Jack once again granted me the privilege to take a tiny peek inside his fascinating mind. Without preamble, he rattled off which color he associates with each day. And then, just as suddenly as the conversation began, he snapped his mind closed and moved on to something else entirely. I tried to probe further; why was Saturday red? Was the entire day red, or just the morning? “I told you. No more,” he answered in a clipped tone.
Later that winter, Riddle Brook Publishing asked me to write a book based on our life with an autistic child. I happily agreed, and throughout the spring and early summer I wrote, putting together words and sentences, essays and chapters, to describe our days with five children and autism. Some days the words came easily, other days I struggled to make sense of my world with Jack and transport him onto the page. Whenever I approached something that seemed like writer’s block, I reminded myself that my subject—my inspiration—was right in front of me at the dinner table every night. All I needed to do was watch and listen and learn from my son.
And then, like the pieces of a puzzle, the elements of the book came together. It describes our journey to Jack’s diagnosis, and all the funny and frustrating and sad times since the day we first heard the words your son has autism nearly seven years ago. It describes how a boy with a literal mind made peace with religion and accepted his first communion, and how our family of seven took our first vacation. It describes his obsessions with things like dates and cars, his fascination with shampoo and license plates.
Every couple of chapters, I included a letter to each of my children on their birthday, describing their likes and dislikes, their temperament, their appetite. Describing the way they’ve made room for autism and embraced their unusual brother.
Recently someone asked me, “Who is this book for?” And after considering the question for moment, I answered that originally it was for me, a way for me to creatively untangle the web of emotions and bewilderment and frustration autism often left me with at the end of a long day. But, as the project progressed, I realized it wasn’t just for me; it was for Jack and our family. And by the final round of edits, I decided it was for an even larger audience then that—it was for anyone and everyone who has ever been touched by autism.
I decided it was a way to put a face to the name of autism; the sweet face of a little blue-eyed boy who loves music and marshmallows. As I read through the book one final time, making last-minute changes and edits, I realized the book puts a voice to the message I’ve been saying every single day since Jack was diagnosed: that beneath the rigidity and anxiety and stimming there is a charming, intelligent, witty child peeking out.
It’s about how Jack brings out the best in my, my husband, and my children every single day.
Throughout the summer I struggled to title the book, tossing around ideas like Life with Autism and Loving Autism. For a while I decided to use the word snowflake in the name, because that’s often the image that comes to my mind when I think of Jack and autism; a beautiful, fragile snowflake that is always changing, always in motion. But one afternoon in late August I was driving the kids to the town pool, and Jack said, “Look, the sky is so blue.” And as I peered up through the windshield at the rich blue summer sky, I thought again of our conversation the previous fall, when he talked about the colors of the week.
For a short time I thought about calling the book Thursday is Purple, but then Jack off-handedly remarked Thursday is sometimes green. (Come on, Jack-a-boo. I’m trying to write a book about you here. For real.)
And so, it became What Color is Monday? How autism changed one family for the better.