Perkins School for the Blind Transition Center

Epic Scenes from a Barbershop

Yesterday afternoon I poked my head into the family room where Jack, Charlie, and Henry were sprawled watching Scooby Doo, and announced we were going for haircuts. “No!” they shouted in unison. “No haircuts!”

I told them we’d stop at the school book fair first, and jollied them out the door with promises of new joke books and Batman stories. About forty-five minutes later, we pulled into the barbershop parking lot, and Jack began to whimper and whine. As I opened the van door his agitation accelerated and he refused to get out of the car. Wow, I thought to myself. He’s really off today. I scanned my mental list of things that typically contribute to Jack’s offness—bad night of sleep, hunger, dog-sighting—but couldn’t come up with a reason. “A haircut will give me a headache!” he repeated over and over.

Once I finally got him out of the car, he wouldn’t come inside. He stood outside kicking the door with a blue sneaker while the patrons waiting inside exchanged glances. I told him brightly that his favorite stylist, Terri, was here, she was going to cut his hair like she always does, and then I gritted my teeth, bent close to his ear, and hissed that I would take every one of his books back if he didn’t come in the door this minute.

“It will hurt!” he raged. “I will have a HEADACHE from this haircut!”

We waited for a little bit, and just as it was Jack’s turn to climb into the chair, Joe walked in to drop Joey off on the way to bring the taxes to our accountant. Jack started to throw an epic tantrum, jumping and crying and twirling like a tornado.

I looked over my shoulder as Joe started out the door, asking for help with my eyes. He walked back in and took Jack by the shoulders, directing him towards the large black barber chair as Jack screamed and flailed. I backed away, letting Joe handle the moment, and made nervous conversation with a mom who was waiting with her two sons.

In the midst of the chaos, Joe and Terri discovered a giant spot of dried gel behind Jack’s left ear. I remembered the day before how he’d disappeared into the bathroom and came out with his hair slicked and sticky; he must not have washed it all out during his nightly shower. And he was terrified it would hurt.

Slowly, they maneuvered him towards the sink, promising they could wash it out. But Jack was lost to any reason – agitated and deregulated and just plain out of his mind, he kept sitting up and getting water everywhere. I heard an edge in Joe’s voice and decided to step in, to declare game over.

This did not go over well with my husband, and when we got home we launched into an epic argument.

And our epic argument made Jack’s epic tantrum seem like child’s play, as we waged our war of how could you not see that giant gob of gel in his hair and why don’t you try taking him for haircuts and doing homework with him every night. A war of the always and the never; you always undermine me and you never hear him when he’s screaming.

Like many men, Joe’s first instinct in a stressful situation is to try and solve the problem, to create a solution. Boy needs haircut, gel in hair, wash gel out. (I didn’t mean for this line to come out so caveman-like! Honest!) I, on the other hand, am very sensitive to Jack’s distress, to the screams of the water is running down my back and those scissors will hurt. In most cases, Joe’s practical yin to my emotional yang works very well; he stays focused on the task at hand while I soothe and pacify. And the hair gets cut.

But not this time.

I believe kids can bring out the worst in a marriage. Like miniature construction workers with teeny-tiny pick axes, they chip away at your foundation until there are huge, gaping cracks. Five kids can do a lot of damage. And a kid with autism? Well, I probably don’t need to go on and on about that.

So Joe and I went round and round with our verbal jabs and punches as if we were boxers in a ring, ducking and moving like Rocky and Apollo. But instead of Mick and Adrienne and that weird guy Rocky used to work for on the docks watching us, our spectators were four boys and a girl. And their eyes were as round as saucers.

“You no SHOUT! You hurt ME EARS!” Henry refereed. We paused momentarily to tell them Mommy and Daddy are just having a disagreement, we are fine, it’s no different from the way they fight with each other over Legos and matchbox cars and who got the last purple popsicle.

“We never fight like this”, Charlie whispered conspiratorially to Joey.

“Why don’t you get DIVORCED already”, was Jack’s contribution.

Maybe right now you’re reading this post and shaking your head, thinking how you and your partner don’t disagree or argue in front of your kids. And if that’s true, I’m in awe of you. I heart you. But, you may want to find another blog to read because we probably don’t have all that much in common.

(Also, allow me to lend you Jack for a week. Let’s see how long you keep your cool with a seventy-five pound boy who lies on the kitchen floor for forty-five minutes screaming “I HATE THIS FREAKING PIECE OF SQUASH!”)

The irony of the barbershop scene is not lost on me. I mean, I was interviewed by FOX News, spouting off things like their behavior always has purpose and try to understand what motivates them. Meanwhile, I missed the real reason Jack didn’t want to get a haircut: he was afraid the scissors would pull on all that flaky white gel and would hurt his head. That’s why he kept telling me a haircut would give him a headache.

I wrote a book about autism, and how much it’s made our family better. And it really has. But I’m nervous some people may interpret my message to mean we have a handle on autism, we manage it flawlessly and effortlessly. But this business of spectrum disorder is a tricky one; just when the seas feel calm and the wind is quiet, there is a sudden violent squall, and Joe and I are left reeling, wet and shivering in the cold. And then, like any good married couple, we turn on each other.

The truth is, ours is a life of a thousand frustrations. Sometimes we fight, sometimes we cry. We are always trying to find better ways to communicate when the storm of autism sweeps over us.

It would be much easier to only share the bright spots with you, the license plate games and the trips to Cancun and the family karate. But that would not be real. And so I offer you our imperfect life, a life bursting with joy and frustration, of tears and chocolate chip cookies warm from the oven.

I offer you our truth. Sometimes it is raw and fragile.

After a fitful night of sleep, this morning I woke to a cool, gray day. I wanted to curl under the covers and sleep until noon. I wanted to pack up all of Joe’s clothes – the ugly flannel shirts from college, his new dress pants from Banana Republic – and throw them down the stairs for dramatic flair. I wanted to cry.

But I didn’t do any of these things. Instead, I went through the motions and the mechanics of our life. I toasted waffles and went to the gym and waved to the teacher in the preschool line. And slowly, like winter turning to spring, I started to thaw.

Will we get divorced? Probably not. We will do what we always do; we will return to one another. With a brush of our hands or a quick smile over something funny Henry says at dinner, we will move forward. Joe’s dark brown eyes will twinkle and he’ll share a small joke as a peace offering.

We will forgive.

Because it was Joe who was there to hear me say something is wrong with him as we sat on our old brown couch in Buffalo, talking and worrying about Jack late into the night. He was the one I called to shout he said mama just now, mama! In my darkest moments of frustration and fear, he is the one I need the most.

This is our own epic life.


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