This February marks two years since Kai’s diagnosis.
I’ve been thinking a lot about those two years lately, not just because of the timing, but because of another little boy.
A few weeks ago, the manager at a gym where I teach yoga told
me that one of the personal trainers was looking for me. He has a
three-year-old son, she said, and they were testing him for autism.
I tracked the guy, Keith, down near the treadmills.
"We'll find out tomorrow," he said.
"I don't know if it is or isn't."
It is.
Keith told me in an e-mail. His son sounds a little like Kai
at that age—verbal but not verbally interactive, lots of behavior problems.
I e-mailed him back, a lengthy note about IEPs and
IDEA and OT and ST and ABA. I wished I could say, and really have him believe,
that it's going to be okay. Because it is. His kid might have autism, but the
world is going to keep turning.
I don't know that I would have believed that when
Kai was three.
We didn’t know what was going to happen with Kai back then. We didn’t even know what he heard or saw or remembered or understood. My memories of that time are of driving him to appointments or to and from school, a stony silence from the back seat. He never talked to me except to demand for food or a toy. He never answered any of my questions. There was a time where he couldn’t tell me apart from another mother in the pick-up line at school, a woman who looked nothing like me.
:::
Me: Do you guys want to bake cupcakes?
Jovan: Yes, but I don’t like fruit in my cupcakes. Or in regular cake. No fruit. Um, Kai’s Mommy? I don’t want any fruit in my cupcakes or in any regular cake. I don’t like fuit. Not in cupcakes. Or regular cake either.
Me: Let me see if I’m following you. You want fruit in your cupcakes?
Jovan: (alarmed) No! No, I don’t like fruit! I don’t want any fruit in my cupcakes! Kai’s mommy—
Kai: Jovan, Mommy is being silly.
Jovan: Oh.
Kai: She’s silly all of the time.
:::
We took Kai back to the doctor who diagnosed him this past summer for a follow-up, and to measure any progress.
I filled out all of the
forms (again) and spent an hour on the phone with the doctor talking about Kai.
“He's doing so well!” I gushed.
There was part of me that wondered if he would
just...fall off the spectrum. He's been talking up a storm, he's becoming
increasingly interactive. He has friends.
The doctor was really interested in Kai's friends,
and asked me repeatedly about them. He said it was a good sign.
Kai's sessions with the doctor were different this
time. I stayed mostly in the waiting room, reading old copies of Architectural
Digest while Kai worked with the doctor one-on-one.
It turned out that the “falling off the spectrum” thing was a naïve fantasy, at least for now. Kai is still a fat bag of autism spectrum (even with the new DSM criteria), with a healthy dose of ADHD thrown in for good measure.
But even though his conversational skills are closer in line with Ryan’s than with kids his own age, he’s average in plenty of areas, and above average in a few.
“There’s a lot of reason to be hopeful,” the doctor said.
We still struggle with behavior problems, but not the way we used to, when anything could lead to a meltdown that could last an entire day. I haven’t had to draw him pictures explaining the he couldn’t bite his sister, or punch me, or hurt his friends in months and months.
:::
Me: KAI! Dammit! Why is this iPad covered in snow?
Kai: I put the iPad in the snow.
Me: Kai, you can’t put the iPad in the snow, not ever. Not ever, ever. It will ruin the iPad. It will stop working and then we won’t have it anymore.
Kai: --
Me: (wiping down the iPad with napkins from the car) What would make you even think to put the iPad in snow? If this thing breaks you would be very, very sad. And I would be very, very mad.
Kai: --
Me: Kai, I’m not sure you understand.
Kai: I understand you. Don’t put the iPad in snow or it won’t work anymore.
Me: Oh. Well. Okay then.
:::
It’s been two years since Kai’s diagnosis, but it’s been forever since I was became afraid that he would have autism.
That actually started when he was about six months old, though not because he had any signs at all. In fact, it would be a long, long time before any whispered the word in my ear.
No, it wasn’t anything about Kai that scared me. Rather, it was the idea of losing Kai—this smiley, chubby baby that had become my whole world, that this kid would shut down, turn off, get lost inside his head. That he wouldn’t love me or know me. Me or anyone else.
I wonder if, somewhere deep in my bones, I already knew.
I told Keith that he should keep the faith—faith that all those hours in therapy, the fights with the insurance company and the school administration and your spouse and whoever else, that every time you ask him a question knowing full well he won’t answer, that every time you get punched and kicked and spit at and respond with patience you didn’t know you had, that every time you’re drop dead exhausted from the sheer effort of merely getting your kid dressed in the morning—that it will all be worth it.
It will be worth it, Keith.
One day, your boy will do something so mundane, so stunningly, amazingly typical, and you will never forget it, never even forget where you were, the color of the sky, the song on the radio.
And you will know that it’s going to be okay.
:::
Me, in the car, on the way home from school: My hands are cold, Kai.
Kai, from the back seat: Mine, too.
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