I never make New Year’s resolutions. I can’t really say why, I just never have.
I did see a cute idea online a while back, and while we were eating dinner one night last week, I suggested we keep a small jar on the kitchen table, and every time something good happens to one of us—a good grade or a fun day or whatever—we can write it down on a little piece of paper and put it in the jar.
Then next year, on New Year’s Eve, we can take all the papers out and read them and celebrate all the wonderful moments we had throughout the year.
“Can I use my markers?” Henry asked.
“Yes, of course—”
“Do you mean good stuff for the whole family or one person?”
“Well, Charlie, I think for–”
“That is. The STUPIDEST IDEA. Ever.” Jack announced. He was rolling a meatball between his fingers.
I looked over at my 11-year old son—the one who used to keep every family tradition and drag out the Valentine’s Day hearts in January and beg to go apple picking in August—and I sighed.
I like to compare Jack to a snowflake. He is unique. He is original. He is dazzling and complicated. And if this boy is a snowflake, then autism is the snowstorm in which he has been trapped for the past month.
He still isn’t sleeping well. He’s still angry, and swearing, and stimming.
He’s still chewing on his clothes and his fingers, and he leaves a wet, sticky trail on every single thing he touches—the remote control, his pencil, my phone.
He is raising his fist to us, and stomping his feet, and slamming the doors.
For weeks I was sure my tender, sweet, funny, fragile boy was still in there—that he was simply hiding beneath an icy cover of rage and anxiety—but now, as we slip and slide and scramble to try to lead him out of the blizzard, there are moments when I’m not so sure.
This is the dark, scary side of autism you don’t hear a whole lot about, and I get it.
Trust me, I get it. When Jack was a toddler and I had to pick him off the floor of Walgreens and carry him over my shoulder, kicking and shrieking and crying, well, that was a little more palatable. The public has witnessed many children throw tantrums, and although autism’s rages are high on the Richter scale, they aren’t all that inappropriate.
Now, it’s getting personal.
When Jack was in the second and third grade, he started to reach for the worst words he could think of—intermingling phrases he’d heard on the radio or TV with everyday language.
Give me some. SEXY pancakes.
It is for stupid.
I need no static. On the DAMN radio.
In sixth grade, words are like the forbidden fruit on a really tall tree, and Jack is going to stretch as high as he can to reach them.
I think for drugs. Everyone does them.
I want to do. For an execution.
I hate us.
I hate me.
I hate you.
Hearing him say this stuff was heart wrenching and maddening and confusing all at the same time. I didn’t know what to say or do or think. I, too, was trapped in the storm, and I couldn’t get my footing on the slippery ground.
I needed a plan, and so I started to make some small changes.
I made him move.
Not out of the house, of course, as tempting as that sounds. No, I made him move his body.
Jack is not particularly inclined toward exercise, and unless there’s a sit-on-the-couch-playing-Minecraft Olympic sport that I’m not aware of, he moves very little throughout the day.
Now, every single time he says a swear word, I make him go outside with me to play basketball. And we stay outside until he makes at least one basket—more if he says a bad word on the way out the door.
In the middle of dinner.
Right before the bus in the morning.
Last Tuesday, at 9:00 at night in our pajamas, which stunk because it was about four degrees here in New Hampshire and the entire driveway was a sheet of ice.
I made myself move.
Again, not out of the house—although a little 3-bedroom condo of my own wouldn’t be the worst thing in the world—but actually move.
For about three years now, I’ve alternated between Crossfit and Bikram Yoga throughout the week. But as Jack continues to get more and more agitated, and my own stress is building, I find the silent hush of the Bikram hot room too quiet. Every time I try to relax, my mind spins and races.
I hate you I hate me I hate us.
Similarly, Crossfit’s heavy stamping music and rap lyrics only reminds me of his hostility.
So I’ve started moving my feet to the pavement, or rather, the treadmill because it’s freezing cold here and I’m not about to take a chance with a bear who decided not to hibernate because he’s hungry.
New Hampshire, remember?
In the past month, I’ve logged more miles on the treadmill than I’ve put on my car. And before you ask, no, I haven’t lost a gad-dummit pound.
But I needed to be alone, and hear my own music and breathe my own rhythm and, for one single hour, run my own race.
This never, ever gets easier. When Joe and I originally started Jack on the anti-anxiety medication clonidine, we had grand visions of taking him off of it in a year or two. He was six. Now he’s eleven.
Isn’t our naiveté just precious? Honestly. We would be adorable if we weren’t so blindly dumb in the face of autism’s cunning aptitude.
I hate it. I hate having him on medicine. But the truth is, for him it works, mostly because it helps him stay asleep a little longer. So last week our doctor gave us a new prescription, and we crossed our fingers and we prayed.
I stopped letting him get away with crap.
My biggest challenge as a mother to a kiddo with autism—besides the medicine thing and the no sleeping stuff and the swearing and the tantrums and the rolling of the meatballs between the fingers because he must, must feel every bite of food before he tastes it—besides all that, my biggest challenge is trying to decide if something he’s doing is a part of the spectrum disorder, or just behavioral.
Is it something he’s unable to control—like stimming or anxiety or an interrupted sleep cycle—or is he trying to get a rise out of me?
The fact is, autism or not, Jack does not have the right to turn our house on its ear week after week, and keep all of us on the edge of our seats with his wildly vacillating moods. So we laid down the law and made a few simple rules.
There is no swearing. There are ninety million and forty-six other words he can choose, but he can’t say F&^%.
F&^& equals basketball in the driveway, and I don’t care how cold it is outside.
A raised fist is a one-way ticket to his room for ten minutes.
He can do homework at home, or during recess the following day. This is his choice.
I am still.
Not long ago I was talking to someone who is dear and special and wise, and I told him all about Jack’s distance, his aggression and anger and deep unhappiness, and this man asked what it was like for me to watch my son change so dramatically from one day to the next and I cried big dumb tears and I said it was hard—very, very hard and I was sad and confused and scared we’d never get him back.
And then he asked, “Are you only as good as Jack is?”
This question really made me stop and think. I considered the way my moods ebb and flow according to Jack’s highs and lows, and the way I suffer every one of his heartbreaks as if they were my own.
That’s when I realized: although I will forever be bound to this boy by an invisible, tenuous umbilical cord, I cannot chase him through the snow. I have to stand still, and wait.
Is all of this stuff working, the running and the basketball and the little pills in an orange vial? I can’t really say. There have been moments where I glimpse my child through the softly drifting snow—an afternoon without a rage, a small smile, a quick glance in my direction—and then he retreats again into the darkness.
But if nothing else it is a plan, a homemade recipe of exercise and medicine, deference and stillness. At this point it is the only hope I have to bring my son out of his mysterious, private tempest.
And yesterday I found this crumpled piece of paper on our kitchen table, like a gentle snowflake that had fallen from the sky.