punchdrunkmom

In which, on the eve of his 6th birthday, the boy is quite the communicator

It’s birthday week here at Punchdrunk HQ, as Kai turns six on Wednesday. He has been counting down the days since February 1.

“What day is it?” he’ll ask.

I'll answer that it was the 2nd or 6th or 18th, and then, “When’s your birthday?”

And he’ll actually groan. “Oooohhhh. It’s not until the 27^th.”

Never has time marched so slowly for a young boy. Well, except for December. As I recall, that marched pretty slowly, too.

I asked him what he wanted for his birthday.

“Walkie talkies,” he answered. "Or a scooter."

The scooter was out of the question, as he'd gotten a bike for Christmas that he has exactly zero interest in because it had the wrong number of wheels (2), plus it's just too damn cold for that stuff right now. I thought a walkie talkie would indeed be a good present, though I did exactly nothing to procure a set of them, busy as I am nursing my rage over a pending IEP meeting and navel-gazing over my own birthday.

:::

My parents were here over the weekend for some birthday festivities. Right before they left for the airport to go home, I let Kai open the gifts they’d brought.

One was a birdfeeder kit, complete with nails, glue and paint.

“Can we put it together now?” Kai asked.

I closed my eyes briefly, because OMG. That was the last thing I wanted to get involved in just then. It was Sunday night, we’d been to the Children's Museum, had a little party for him, I was full on exhausted and I hadn’t gone to the grocery store or done any laundry or made lunches and Monday was coming fast.

“Honey, let’s put it together next weekend,” I suggested, hoping that would buy me enough time to pull my act together.

Kai opened his next present, which was a watch. He held out his wrist while I fastened it for him.

“What time is it?” I asked.

He looked at the watch.

“It’s time to make a birdhouse.”

Right.

And so:

:::

He opened another present Monday morning before I woke up. It was books.

“Did you open a present?” I asked him. This was a dumb question, what with all the torn wrapping paper and bows scattered about, but it was Monday morning and that’s when the dumbest questions get asked. 

“It’s not the right one,” he said.

“What do you mean?”

“I don’t want silly stories about animals or fairy tails,” he said, sounding very much like a Gordon Lightfoot song.

I raised my eyebrows at him.

He looked at the floor. “It’s supposed to be walkie talkies.”

I told Scott this story later on.

“What does he want walkie talkies for?” he asked.

“My guess would be to communicate with someone remotely,” I said. It hadn’t occurred to me to ask Kai why he wanted the walkie talkie, so I responded with my weapon of choice—sarcasm. But damn. Kai wants to communicate. With someone.

Right on.

“Oh,” Scott said, obviously having the same revelation I just had. “Right on.”

And so:

:::

We left for school on Monday, stepping out onto the porch into a bright day. It was above freezing for the first time in days and days. Nothing was falling from the sky.

“Where are all the snowflakes?” Kai asked.

“They’re gone, I guess,” I replied.

We piled into the car with much squishing of down and snapping of buckles, whining of the garage door, the mental note that we were running late.

“Do snowflakes blow out like candles?” Kai asked. “Or is it like a light switch? Switching off winter?”

I turned around to look at him.

"If you are going to start speaking in poetry, maybe we don't need as much speech therapy," I said. 

But when I thought about it later, I realized that I was so caught off guard by the language of his question that I never actually answered it--a question that I think was about the nature of the universe, like is weather random or is someone in charge of some kind of divine button that controls the snow?

It's a brilliant question. 

I don't know how I'll answer it.

Maybe over walkie talkies.

 

 

41

Hey! What’s going on? I turned 41 on Tuesday.

41.

So, you know. There's that.

You know what I found the other day?

Check this out:

Don’t see it?

Maybe this will help:

That, my friends, is a gray hair, which I did not pluck because I will be dying it back into oblivion on Friday. I have another one, too.

In all seriousness, though, getting older doesn’t really bother me all that much, aside from the fact that if I happened to sit next to Ryan Gosling on a plane he probably wouldn’t consider asking me out, especially if one of my kids was throwing Cheerios at him. And also especially if my husband was there. But the whole scenario is unlikely, as I doubt Ryan Gosling flies Southwest.

Wait. What was I talking about?

Right. So the other day it was my birthday.

I spent the previous weekend in Las Vegas and I met a cool woman at the airport on the way home. She was drinking a chardonnay while some guy was trying to talk to her. I sat down on the only available stool, which was on the other side of the guy. He was several sheets to the wind, involving everyone in his conversation. He asked me if I would go see Rick Springfield in Nashville with him. The question was not about committing adultery, but about actually flying to Nashville for a Rick Springfield concert, which a couple he knew had actually done.

“I mean, would you do that?" he asked.

I had a lot of questions about the scenario, like who was paying and if the seats at the show were good. 

"I mean, you're the right age for it. Would you fly to Nashville to see Rick Springfield?” And, of course, I am the right age for it. I remember when Jesse's Girl was a hit on my transistor radio. Look it up, children. 

I lost interest in that whole conversation pretty fast, and the guy turned back to the woman with the chardonnay. She was beautiful, dark with long, wavy hair. She told him that she was going to Africa in two weeks.

“What for?” I asked.

“To ride my BMW motorbike off road,” she said, grinning wide. She said she'd bought it as a present to herself when she turned 50, and that she bikes or rides or whatever you call it in a club with a bunch of other people. She’s the only girl. Her teenage son thinks it's pretty awesome.

“What made you buy a motorcycle at age 50?” the guy asked her.

I answered before she could. “Because 50 is when women really become badass.”

Which I think is pretty true. The kids need less attention, maybe you have a little more money, some free time. You start to think about who you are beyond this. Perhaps you become a writer or Secretary of State, or you travel the globe or get involved with a drug cartel making methamphetimine. Or maybe you become a motorcycle-riding woman from Santa Fe whose teenage son isn’t afraid to be seen with her.

I began to collect my gear to catch my plane, the woman reached out to me and gave me a hug. It was like a popular senior transferring her cool factor onto a freshman.

On the flight home, I thought about what I liked about getting older. I like that if I want to do something, I do it. I like that if I don’t want to do something, I don’t do it and don’t feel obligated to lie about it. I feel like I appreciate what I have, so that I don’t waste energy or time on the things I don’t have. I feel like I can be proud of myself if I do something well and don't feel like I need to worry if someone else thinks it's bragging. 

And then the plane reached 10,000 feet and I watched a few episodes of Breaking Bad.

Anyway.

41.

And, as Dear Abby always said, it’s so much better than the alternative.

 

 

Two years later

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.