My Forever Changing Heart

“I’m thrilled to have Jack start our summer program. I just don’t know if he’ll be able to go on the camping trip the second week with the group. It’s for two nights, and I’m not sure he’ll be ready,” the program director said kindly.

“No,” I cradled the phone against my shoulder while I picked up my 7-year old’s red t-shirt. “No, I can’t see how that would work.”

I hung up the phone and finished folding laundry. Somewhere around the bottom of the basket—when everything was a tangled pile of mismatched socks and balls of lint—the two sides of my brain began talking to each other.

Could he possibly go camping?

That’s crazy, he isn’t ready. He just started this program and they barely know him and he doesn’t know them and he’s never been away from us except for one night at his grandparents’ over two years ago.

He hates when he’s left out of things.

He also hates change.

Am I holding him back if I don’t let him go?

I’m just trying to keep him safe.

But could you even imagine him out of the house for two days? How quiet it would be?

I think that’s called a reprieve. An autism reprieve. A stimming reprieve. A tantrum reprieve.

Camping? Seriously?

This happens all the time, this chatter. It’s not exactly my right brain talking to my left brain or anything as scientific as all that. It’s more like a steady stream of consciousness, or an ongoing dialogue. With myself.

I don’t think there’s a name for this, but some may simply call it, well, crazy talk.

It can be over something as simple as his birthday present, like his year, when he asked for an IPod Touch.

You know, an IPod Touch by Apple, the thing that looks like a phone but he can’t actually call anyone, he can only text people if he has Wi-fi access, and use FaceTime, and manage his calendar.

The morning of his birthday, I stood in the electronics aisle at Target, thinking of all the reasons why I should not get this boy the IPod Touch I was holding in my hand.

He’s on screens enough as it is! I’m sick and tired of constantly trying to get him off the computer.

He’s with me all the time. Literally, all the time. It’s like he’s my shadow. Why would he ever need to text me or FaceTime me?

But wait! His brother Joey got an IPod the year he turned twelve.

Jack is not Joey! He doesn’t regulate himself! He’ll just sit on it constantly and play games and download apps and text me all the time about annoying stuff like what to rent from Redbox and before I know it he’ll be an obese teenager with no one to talk to but people he met through YouTube.

It’s too expensive.

But we never throw him a party like we do the other kids—remember that stupid magician we hired for Charlie one year, he was a crazy amount of money and all he did was blow up balloons shaped like snakes.

Snakes are easy animal balloons to make. Everybody knows that.

It might help him communicate better. 

He communicates fine.

Except when he mixes up his words, like the other day in the grocery store when he wanted that thing he kept calling rosetti chicken and I thought he was talking about some random brand of frozen chicken fingers I must have bought once and I kept bringing him over to the frozen foods aisle and he kept taking my hand and leading me back to the section with the prepared foods, until he ran over to the long, stainless steel counter and grabbed something in a clear plastic container with a cardboard handle.

A rotisserie chicken.

So, maybe his communication isn’t so great.

Now that I think about it, this line of thinking isn’t just reserved for birthday presents and camping trips—I do it for pretty much every single thing related to Jack and his autism.

I wish he played soccer. 

But watching soccer is the boring-est thing ever.

And he hated it that one year we made him do it—he complained the fields were too green and the sun was too hot and once we finally got there and we got him out of the car, he ran away screaming like a madman whenever the ball came towards him. 

He hates soccer.

I think he’s high functioning.

Or maybe he’s low functioning.

I don’t know what he is because he can cook waffles from scratch but he can’t kick a ball or stay calm in a thunderstorm or write a paragraph about what he did over summer vacation even though he’s twelve. 

He can start a load of laundry.

But he can’t make change from a dollar bill.

He will remember our neighbor’s birthday is on September 20^th.

 But he won’t say hello when she comes to the door.

He has recited the running time for every Disney movie made since 1986.

But he’s never said I love you.

He will, but he won’t. He can, but he can’t. He has, but he hasn’t. 

Maybe there is no high low medium in between functioning. There is only silly unusual brilliant autism.

I love it. I hate it. I adore it. I’m scared of it.

Maybe I should make him try soccer again.

Jack did go camping. He really wanted to go and the director and I agreed that he was ready and so he packed up his water bottle and his bathing suit and his sleeping bag. On Tuesday morning he got out of the car and walked into the building without a look back.

I watched him hitch his backpack up higher on his shoulders and I thought, oh, Jack-a-boo.

On the first night he was gone, I kissed my other three boys in the room they all share. I stood on my tip-toes to reach 10-year old Charlie in the top bunk, and when I glanced over at Jack’s bed, it looked so empty, I wanted to cry.

His weighted blanket was all piled up at the bottom because he tried to pack it, and then I snapped at him that it was too big for his backpack, couldn’t he see it would never fit—he really needed to just stick to the list and stop trying to shove all these extra things into his bag. So he left it there, crumpled.

I wandered downstairs and sat at my desk.

I can’t believe he is off camping two hours away from me in a tent at a campground and I don’t know what he had for dinner or if he had dessert. He always has to have dessert, even if it’s only a popsicle.

Popsicles are kind of a lame dessert.

The house is so quiet without his rocking himself to sleep in his bed.

I wonder if he’s sad, or homesick, or happy.

This is respite. This is reprieve. This is the break I’ve been wanting for so long—the break from the milk and the Ronettes and the autism and the chicken.

This is progress.

I miss him so much I can’t breathe.

I miss him the way one misses—what is it called? When someone’s arm or leg is gone but they still feel like it itches and sometimes it aches?

Phantom limb. I miss him like a phantom limb and I keep turning around and asking myself where’s Jack? What’s he doing? What does he need?

I probably shouldn’t compare Jack to a phantom limb because it’s really sad that some people are missing an arm or a leg and he’s only on a camping trip.

But I miss him—I miss my shadow, my rosetti ball and chain, my forever changing heart.

My silly, hopeful, brilliant son of autism.
Sitting there in my office, with the house quiet all around me, I kept picking up my phone so I could read and read and read again the text Jack sent me, the morning he left to go camping, from the IPod that I almost didn’t buy.