Eyes Open, Eyes Closed

Carter doesn’t talk about his illness. Not ever. Not to his dad and me, not to his therapist, not to his psychiatrist, not to anyone.

If asked why he goes to therapy, he says, “I go to talk”

If ashed why he takes medicine, he says, “I need it,” or, “My mom tells me to.”

We have tried, on occasion, to discuss the matter with him. Or rather, to test his curiosity about it. It seems that he has none.

No, that’s not quite right. It’s more accurate to say that he is anti-curious. When any of us (parents, grandparents, therapist, siblings) tests the topic Carter reacts almost violently. “I don’t want to talk about that! Don’t talk about that where I can hear you!”

So, OK. That’s fine, except that I don’t understand it even one tiny little bit. I am endlessly curious, and so possessive about my own internal life that I’m rendered furious if anyone thinks they understand something about me and I don’t agree with them. I gauge my internal environment constantly. Even when I was a child I explored my mind and my behavior for clues to my motives and feelings.

And if someone thought they knew enough about me to hang a diagnosis around my neck? I damn well would have wanted to know what that diagnosis was, what it meant, what I could do about it, and what the prognosis was (even if I didn’t yet know the word prognosis).

Not so for Carter. We do know that he has put together a few things (like the fact that among his medicines are some that are meant to make the “little guys” go away), but he refuses to let us tell him more. His therapist says this anti-curiosity could be a result of the trauma he experienced two years ago, when he was so deeply ill that his own behavior terrified him. His psychiatrist says his anti-curiosity could itself be a symptom of his mental illness, or that it may have to do with a delusion or hallucination.

Me? In a stunning impulse to look on the bright side (something I usually have to tie myself in knots to accomplish), I’ve decided that he knows on some deep level that there is a whole vocabulary swirling around him, and he’s not ready to know those words and their meanings. Once he hears and understands the words bipolar, psychosis, borderline IQ, generalized anxiety disorder, and all the rest, he can’t un-hear them. He can’t un-understand.

When he wants to know more, I will tell him, but until then, I’m glad that some instinct has helped him maintain what little innocence he has left.

This post originally appeared at Hopeful Parents.

I guest posted at my friend Katie’s blog today. She’s one of my favorite people in the blogosphere and if you don’t know her, you’re missing out on an extraordinary woman. Come on over and read Naked Broken Afraid.

Toothpick Wielding Demons

I put a condiment cup full of pills in front of Carter this morning, as I do every morning.

As he does most mornings, Carter shouted at me, “I don’t have any water! You know I only take my pills with water!”

And as always, I pointed to the water glass sitting next to the cup of pills, and as always he groused and complained because I didn’t tell him about the water, or there wasn’t any ice in it, or it wasn’t in his favorite cup, or don’t you know I can’t take my medicine before I put on my shoes?

We go around like this over and over all day: when I turn on the car (if I start the engine too soon he is afraid; if I start it too late, he is impatient); whether or not the “right” socks are clean; what time he arrived at school (8:28 is too late; 8:25 is too early); whether or not we have the yogurt flavor he desires. He punishes me for perceived slights (mostly these involve not moving fast enough, as in, why didn’t I know what he wanted before he asked for it?), small infractions, and things over which I have no control (the weather, traffic). Most of all, he is driven to blind red rage over the word no. On and on it goes, every moment containing possible cause for fury.

I see the pain and condemnation in the eyes of Carter’s siblings: why don’t you try harder? Why don’t you do more to keep him calm? Why don’t you punish him for speaking to you that way?

The non-reaction that bothers our other kids is not something that Brian and I chose in a careful conversation the way we chose, say, Carter’s school. We didn’t formulate a plan.

We just got tired, so we redrew the line at which we would respond. And we redrew the line again. And again. And again. These days, the issue is not the frightening rages of two years ago. He isn’t a danger to himself or anyone else, not in a physical way. There is no emergency, except in Carter’s mind. Where the illness used to be a shotgun blast into the center of our family, now it’s like an army of toothpick-wielding demons, stabbing us repeatedly. Better, to be sure, but not anyone’s dream of a happy family life.

Here’s the sad fact: there are limits to how much we can do to manage Carter’s symptoms.

In a contest between responding to every nasty word and minor tantrum, or learning to let most of it slip by us, we chose to let most of it go. In the midst of an endless stream of punishable behaviors, the sound of our own voices — Carter, that’s unacceptable; go to your room. Carter, I expect you to treat me with respect; go to time out. Carter, you may not speak to your brother that way; you can’t use the computer for the rest of the day. — was nothing so much as more noise. His noise, our noise, so much noise, and none of it accomplishing anything.

So many features of Carter’s illness come together to make discipline, if not impossible, at least profoundly difficult. His extreme impulsivity makes the span of time between urge and action minuscule. His cognitive issues mean that learning something new (like responding calmly to perceived injustices) takes an astronomical amount of repetition to solidify. Paranoia makes him believe that even the people who love him the most in the world might try to hurt him on purpose. Anxiety leaves him feeling like every problem is a crisis. If he is psychotic, delusions and hallucinations make his outbursts even more irrational.

This is a hard thing, this accepting of Carter’s behavior. I know that anxiety is at the bottom of these behaviors, but what we see on the surface is just so much nastiness and anger. It’s hard to feel sympathy for a person (even a small person) who is acting in such a hateful manner.

Like Spencer said when Carter was a baby who cried all day and much of the night, “It’s a good thing we love Carter or else we’d be banging him on the floor.”

I hate that. Not as much as I hate that my little boy is living in the emotional equivalent of a pinball machine, but I hate it nevertheless. For all of us.