House Rules

by Jodi Picoult

When he cannot find the words for how he feels, he borrows someone else’s. These come from Cool Hand Luke; Jacob remembers the dialogue from every movie he’s ever seen.

In my mind, Asperger’s is a label to describe not the traits Jacob has but rather the ones he lost.

It’s a term we use to get Jacob the accommodations he needs in school, not a label to explain who he is.

I know how to handle their morbid curiosity; it’s their kindness that might break me.

My biggest hope for Jacob is that moments like this won’t happen. My biggest fear: that they will, and I won’t always be there to keep people from thinking the worst of him.

Why would I want to be friends with kids who are nasty to people like me, anyway?

I have spent much of my eighteen years learning how to exist in a world that is occasionally orange, chaotic, and too loud.

Isolation. A fixation on one particular subject. An inability to connect socially. Jacob was the one diagnosed, but I might as well have Asperger’s, too.

There are a lot of moments I used to consider “definites” for a child of mine that, after Jacob’s diagnosis, became “wishes” instead. Going to college. Holding down a job. Finding someone to love him. I suppose Theo bears the brunt of all my dreams. I hope for Jacob to blend into the world more seamlessly, but I hope for his brother to leave his mark.

And I had assumed that I’d go back to work when Jacob was in school full-time—but that was before I learned that being an advocate for your autistic child’s education is a forty-hour-a-week profession in and of itself.

Sometimes I think the human heart is just a simple shelf. There’s only so much you can pile onto it before something falls off an edge and you are left to pick up the pieces.

Dealing with an autistic meltdown is like dealing with a tornado. Once you are close enough to see it coming, there’s nothing to do but weather the storm. Unlike a child having a temper tantrum, Jacob doesn’t care if his behavior is making me react. He doesn’t make sure he’s not hurting himself. He isn’t doing it in order to get something. In fact, he’s not in control of himself at all. And unlike when he was four or five, I am not big enough to control him anymore.

But that’s what autism is, a slippery slope. One minute, you convince yourself that you are so far up that hill you can’t see the bottom anymore, and the next, it’s covered with black ice, and you are falling fast.

That parenting isn’t a noun but a verb—an ongoing process instead of an accomplishment. And that no matter how many years you put into the job, the learning curve is, well, fairly flat.

“My dad used to say that living with regrets was like driving a car that only moved in reverse.”

Real mothers admit it is easier to fail at this job than to succeed.

If parenting is the box of raisin bran, then real mothers know the ratio of flakes to fun is severely imbalanced. For every moment that your child confides in you, or tells you he loves you, or does something unprompted to protect his brother that you happen to witness, there are many more moments of chaos, error, and self-doubt.

All those little autistic kids you see smacking their heads against walls? They’re not doing it because they’re mental. They’re doing it because the rest of the world is so loud it actually hurts, and they’re trying to make it all go away.

“But for the record, I personally subscribe to the belief that normal is just a setting on the dryer.”

“I think you’re the only person who gets me.” I swallowed hard. “When I’m with you, the world doesn’t feel like a problem I can’t figure out. Please come to the dance,” I said, “because you’re my music.”

But the universe has a way of punishing you for your deepest, darkest secrets; and as much as I love my son—as much as Jacob has been the star around which I’ve orbited—I’ve had my share of moments when I silently imagined the person I was supposed to be, the one who got lost, somehow, in the daily business of raising an autistic child.

You don’t love a child for what he does or doesn’t do; you love him for who he is.

“I’m not autistic; I have autism. I also have brown hair and flat feet. So I don’t understand why I’m always ‘the kid with Asperger’s,’ ” Jacob says.