Nearly every day someone asks me something like, “When did you know that Jack wasn’t normal?” And then they stop themselves, stammer a bit, and apologize for saying normal. Their faces turn all red and they look away and stare at their feet. “I mean, you know, what’s normal, there is no normal, sorry for saying normal.”
I can never understand what all the fuss is about. Personally, I love the word normal. Normal is good. Normal is, you know, normal. If we didn’t have normal, we wouldn’t have other things like extraordinary or mediocre or stupendous. Normal sets the bar.
I mean, for the most part, I’m normal. I’m extraordinary at some things (making chocolate-chip banana bread) and mediocre at others (doing pull-ups). I’m not particularly stupendous at anything, so I feel like this balances me out to right around normal. It’s a pretty good place to be.
And the rest of my family? Pretty normal. They’re a quirky bunch for sure, but the quirky things like Henry’s rigidity and Joey’s fascination with Minecraft and Charlie’s anxiety about thunderstorms are balanced out by all of the other things they’re amazing at, like dancing to Thrift Shop and throwing a baseball and coloring in the lines. And making their brother Jack laugh.
Because Jack is not so normal. Jack does not laugh every day or even every other day. He does not like baseball or team sports in general, he does not play with other kids, he doesn’t look people in the eye. He won’t eat wet food and he’s terrified of dogs, blue water in the toilet bowl, and fire drills.
(Reading this, some of you may be gasping or cringing or feeling as though this post is incredibly inappropriate. Just let me say that’s okay, that’s a very normal reaction.)
But it needs to be said, and as his mother, I have to be the one to say it. I have to own this about him and his autism. He is not normal. It is not normal to ask the same question about black widow spiders a hundred times a day or to shriek if a dog comes on Funny Home Videos or to panic if the right radio station isn’t playing in the car.
But you know what else is not normal about Jack? The uncanny way he remembers dates, his love of music, his ability to operate appliances. The way he defies his spectrum disorder to write letters and secretly admire (www.carriecariello.com/2013/03/25/letters-from-a-secret-admirer).
Bill Gates isn’t normal. Mother Theresa isn’t normal, and neither is Hugh Jackman. They all have special qualities like brilliance and kindness and extremely good looks. (I’m referring to Hugh Jackman with this last one, in case there was any confusion).
Over the weekend we were at my sister’s house for her son’s First Communion, and in the middle of the party Jack was deregulated and distressed and excited. He was bouncing from room to room, making his way around the guests as he stimmed and zoomed (www.carriecariello.com/2013/01/07/getting-the-hang-of-it). Every once in a while he would take his fingers out of his mouth long enough to screech at my sister to make sure her dogs were not going to break loose. Sarah, good aunt that she is, took this all in stride and soothed him by saying the dogs were away, he was safe, not to worry. I, terrible mother that I am, barely noticed, mostly because this is how Jack is every time we visit my sister and I’m used to him. Also because she had the best chocolate cake with sugary white frosting I’ve ever had, so I was distracted.
At one point I stood balancing my second slice of cake and chatting with a guest, who pointed out how normal Jack seemed, how high-functioning he is. I looked over at my son, who just then had leaped on top of my brother-in-law’s eighty-year-old-five-foot-tall-a-hundred-pounds-soaking-wet Italian uncle’s back because he thought he heard one of the dogs coming up the stairs. I set my cake down, and walked over to apologize to Uncle Joey and untangle my nine-year old’s legs from the stunned man’s bony hips.
Yep, that’s really normal.
Time and time again I am struck by people’s need to smooth down autism’s prickly feathers, to soften the corners of rigidity and anxiety and language delays by saying he looks normal. I think it’s a natural instinct to try and fit Jack into the mold of ordinary, regular, typical. To normalize him. I tried to do it myself in the early days, when I was a terrified new mother and he a wordless toddler. But slowly I’m learning how counter-productive it is to shove a square Jack into our round world, how heartbreaking and painful and wrong it feels.
Last February we were stuck in the house on a snowy Sunday afternoon. When we finished lunch I told the kids they needed to find something productive to do, that the television and Wii were finished for the day. After a lot of groaning and negotiating, they all headed off in different directions: Joey to his Lego table, Charlie and Rose to a game of chess, Henry to his jigsaw puzzle of the United States. Jack pulled out a long-forgotten Christmas gift; a calendar-making kit.
I wandered into the kitchen where he was coloring, and stopped to admire his work. I was touched to notice he’d included all of our birthdays and drew a picture of the person and their favorite gift for that particular month. And in that moment, I had an odd thought. Sitting at the kitchen counter, watching him painstakingly draw a Lego brick for Joey in March, I thought, I am so glad he has a diagnosis.
Because, if Jack didn’t have a diagnosis, if we went along trying to pretend he was fine and normal, I would not be sitting in my warm kitchen praising his project on that wintry day. I would be stressed out, wondering why he doesn’t color in the lines by now, why is he always playing alone, why doesn’t he answer me right away when I ask him what his favorite color is.
I would spend all of my time concentrating on what he is not, rather than what he is.
This doesn’t mean I’ve lowered the bar or set sub-par standards for him—quite the opposite. Jack’s diagnosis of autism spectrum disorder motivates me to constantly figure out how to help him be the best version of himself possible. But that version may never really be normal, and that’s just fine with me.
Because I don’t want normal. Normal won’t tell me that Thursday is red (www.carriecariello.com/what-color-is-monday) and the last time we went to the movies was on February 22nd, 2013 and help me understand the meaning behind sexy pancakes (www.carriecariello.com/2013/02/04/sexy-pancakes). Normal won’t inspire me to look for the Wyoming license plate.
Maybe you’re wondering how the rest of the day went at my sister’s house. Eventually Jack settled down, and Joe hoisted him on his back and took him down to the basement to peer into the room where the dogs were staying. While Joe calmly pointed out how gentle the dogs were, Jack alternated between covering his ears and clinging to his shoulders. But he stayed there with his father, quieting down just long enough to say they look tired today.
Oh, and before we left I had a third piece of cake. That’s totally normal, right?
What Color Is Monday? is available on Amazon.com and Barnes & Noble.com. You can also follow Carrie on her weekly blog: www.WhatColorIsMonday.com and Facebook.com/WhatColorIsMonday.