“Okay, so I’m going to introduce you as an expert on autism,” the man said.
“Well, uh, that’s not exactly—“
I was huddled in the bathroom off the playroom—dubbed the “red bathroom” because of its maroon tiles and matching Formica countertop—with the phone clamped to my ear, taping a radio show with a news reporter named Samuel Adams.
“I mean, you’re living and breathing it every day, right?” he asked.
“Sure, I guess, but I can hardly say—“
“Then you’re an expert!”
Huh, I thought to myself. He should have seen me trying to get Jack to karate yesterday.
The kids were all off for spring break, and had been alternating between karate camp at our local studio and staying home. We’d been operating according to a Jack-driven schedule: wake at 7:00, pancakes for breakfast, out the door to camp by 7:45.
Whenever people ask me to describe Jack’s autism, I explain that he has three primary challenges related to the spectrum; cognitive flexibility, regulation, and anxiety.
A quick recap: cognitive flexibility means Jack cannot even fathom that you might not like pancakes. In fact, his head may very well blow off of you say something like, “I think pancakes are gross.”
Regulation refers to the way he stims and grunts and jumps. When he does this, he is deregulated and has a tremendous amount of trouble processing language and expressing himself. He looks possessed.
And anxiety? Well, that is autism’s trump card. In the dictionary, anxiety is defined as a state of apprehension, uncertainty, and fear resulting from the anticipation of a realistic or fantasized threatening event or situation, often impairing physical and psychological functioning.
As a mother of an anxious boy, I’ve taken the liberty to make up my own definition: anxiety is a sleek, cool snake that slithers in at the last minute, hissing and taunting and whispering things like you will miss the bus the wind chill is too cold the water in the toilet is too blue that dog will bite you.
I hate that snake.
Thursday morning I needed to switch up the schedule a little bit, so on Wednesday night I tried to anticipate the wily serpent. At dinner, I told all the kids that the next morning was going to be a different. Rose was going to stay home with me for a “girl day”, so I would bring them to camp at 8:30 instead.
Jack barely looked up from his dish of pasta, and Joe and I exchanged relieved glances.
For the first time in two weeks, the puppy woke me in the morning before the kids. Joe had already left for work, and I was sitting in the office at 6:30 enjoying a quiet cup of coffee when Jack burst in, his eyes wild.
“I am LATE!” he shouted.
“No, Jack, remember we’re—“
“LATE!” he interrupted. “We are so late. I have to be there. By 8:00.”
For the next ninety minutes, he whimpered and cried and stomped and tormented me, until at last we all climbed in the car and headed down the driveway. And on the way, the trifecta of inflexibility and deregulation and anxiety swirled together and created the perfect storm.
“Jack, buddy, there’s no such thing as being late for camp. And I told you last night—
“LATE! We are late!” he screamed and kicked the seat.
Let me tell you, readers, that after nine-plus years of living with Jack, of living with autism and the rigidity and the bossiness and that hideous snake, there are still times when I have absolutely no idea what to do. Do I drag this 90-pound boy up the stairs and into the studio? Do I wait it out in the car while he screams and rages?
Unfortunately, Phoebe has asked me to take her off of speed-dial—something about “boundaries”—so I am often on my own with these decisions.
Just then, one of the karate teachers—Jack’s beloved Jenn—bounded down the steps to the car. Slowly, she coaxed him out and told him all the great things they had planned for the day; watching Frozen and karate class and, if the rain cleared, a trip to the playground.
I took the opportunity to head into the studio with the rest of the kids, hoping Jenn would be able to work her magic and convince him to come in. But through the glass door I could see him circling and pacing, waving his hands in the air. I walked back out.
“No! You have to stop talking now. I need to go. HOME.” I looked at him. His eyes were wide and tears were rolling down his face. We were, I knew, at the point of no return.
“Okay, Jack,” I whispered. “Let’s go home.”
On the short drive to the house I vacillated between frustration and heartbreak. I knew he wanted to go but couldn’t overcome the anxiety, that the wily snake had hissed in his ear once again. Rose would be disappointed, and frankly, so was I; disappointed in Jack, in myself, in autism.
With these posts, I try to give you a little happy ending; a glimmer of hope. And by finding the silver lining for you, I am compelled to see it for myself. But this time, I can’t really find the ray of sunshine. Jack did not get out of the car. Anxiety prevailed and autism won.
This time, maybe the happy ending is just in telling the story. Because if I had to keep all of my heartache and regret and sadness inside, well, I might explode. No, that’s not right; explode is a cliché.
I might erode.
Readers, you number almost 10,000 now and some days that scares the crap out of me and makes me very stressed out and other days it makes me feel as though I am part of a big, warm community. I like to think of each one of you in places like Canada and Buffalo and Australia and Wyoming and New Jersey and India, reading about Joe eating all the Oreos and Jack throwing his tantrum over play dough and Joey misspelling talisman.
I am reminded that no matter what kind of storm we’re weathering–autism or divorce or addiction or depression or infertility or back surgery–we all stand under the same umbrella.
We lose our way and find it again.
We hope and despair and love and fear and win and believe.
We live. We breathe.
We are experts in our own right.
On the phone in our little bathroom, I let the reporter introduce me as an expert in autism. After all, like he said, I am living and breathing it every single day.
Just as Sam Adams and I were finishing up and I was quietly congratulating myself on keeping five children and a small puppy quiet for half an hour, Rose walked into the red bathroom. My beautiful pink girl smiled sweetly at me and put her finger to her lips. Then she sat down, went potty as we like to say, and flushed with a flourish while I cringed.
So, if you were awake at 6:00 am on Sunday morning and happened to tune into 97.5 WOKQ , it sounded like this expert was sitting on the toilet for the entire interview.