I imagine most families have a secret language, a collection of phrases and nicknames and code words unique to them, that only they understand and enjoy. I started to consider expressions our own family uses after writing the post about zig-zag moments last week.
We have a lot of nicknames; we started calling our oldest son Boochie the moment he was born, and Jack is Jack-a-Boo or Tobes. Sometimes, when she’s feeling playful, Rose will call him Jackie. Rose-a-pose, Charlie-bear, Henry-benry or Round Boy are a few others. And Joe and I call each other Moms and Dads around the kids. As in Dads, Round Boy needs more milk.
We call our minivan the Red Hot Chili Pepper.
Like zig-zag—a term we use to describe times that are unpredictable and unexpected—much of our family’s unique phrases developed as a result of Jack’s autism.
I use the phrase on the spectrum upwards of a dozen times a day sometimes. My son is on the spectrum, he’s on the spectrum, oh Jack? He’s on the spectrum. Like the word game we played as kids, where we said a word like bubblegum over and over and over until it lost its meaning completely, at times on the spectrum feels like nothing more than an empty collection of letters rolling around in my mouth.
But then there’s the flip-side to on the spectrum, the zag to the autism zig: the not spectrum. Joe and I use this phrase to describe moments when Jack appears to be normal, typical, not spectrum. Times when he shares a joke or makes up words to his favorite One Direction song or looks right smack into my very eyes—into to my very soul—to tell me today I saw a Nevada license plate in the school parking lot. (That is an extra-long sentence for my boy on the spectrum.)
Not spectrum never feels like an empty collection of letters.
When Jack was a toddler he had crazy tantrums, sometimes six, seven, maybe eight in a single day. He’d explode without warning into a whirling cyclone of hands and feet and anger, and it was all we could do to try and reconnect with him, to draw him out of his inner world of rage. We could be in a grocery store, a parking lot, or home getting ready for a bath when something would set him off into what we started to call the red zone; a point of no return.
Then one day his preschool teacher showed us how to kneel before him so our eyes met his, to grasp his wrists with our hands, and to firmly tell him quiet body Jack. It’s an expression we still use today, nearly six years later, whenever we see he’s getting close to his red zone.
We use both of these phrases with all of our kids—I even use them to warn my family about my own mood and escalating anger: if you don’t clean up those markers soon I’m going to hit my red zone.
As he got older, Jack developed his own kind of self-stimulation, a unique combination of galloping and jumping to calm himself. With his two fingers in his mouth, he leaps around the house and clears his throat over and over. We call these movements his zoomies; his way of quieting the invisible ants that I imagine crawl all over his body throughout the course of his day. His way of shaking them off as they tread oh-so-lightly across his limbs and torso.
Then there are those situations where I can’t keep in front of Jack, I can’t anticipate his movements or predict his mood. I call this trying to stay ahead of the curve. This happens a lot at school events and holiday parties; our most memorable being a cub scout meeting about a year ago. Jack’s den had been invited to tour the local news station and meet the weather man. I got a sitter for the other kids and gamely set out with Jack complaining loudly in the back seat.
He fussed and whined for the entire drive downtown, and once we got into the station he started to bounce and stim and spring around like a mouse released from a can. He was everywhere at once; it was as though there were actually three Jacks, and just as I chased one away from the high-tech camera, another one popped up behind the weather man’s lap top, fingers a-typin’. Then, just as quickly as I shooed him out of there, he leaped over to the anchor desk and applied some lipstick he’d found. (Fuschia, in case you were wondering.)
I also think of this as playing the game whack-a-mole, where you race around a room pursuing a mole who pops up out of various nooks and crannies. Except moles don’t wear lipstick.
Ahead of the Jack curve.
On the short drive to church yesterday the kids were in a chatty mood, noticing everything from the sparkly snow to the leftover Christmas decorations. After a few minutes the conversation turned to skiing and the lessons the three older boys were taking that afternoon. We talked about last year’s attempt at this new sport, how hard it was to learn, how they would try again.
From the third row of the van Jack said briskly, “Skiing. This year I will. Get the HANG of it.”
In the front seat Joe and I exchanged a look and a smile over an unexpected non spectrum moment on a wintry Sunday morning. In that instant I thought of all the things I will try to get the hang of; my red zone, zig-zag times, managing zoomies. And of course, staying ahead of the curves autism throws me.
And just then, in the cozy warmth of the Red Hot Chili Pepper, we found yet another expression for our family: I will get the hang of it.