sorting it out
25 January 2001
How do I explain what’s been going on in my life and in my head for the past week? I feel absolutely stone shocked one minute and feel an actual smile dawning the next. Oppressive storm clouds and then a ray of warm light. I feel wide open and incredibly vulnerable. Shaky. Tears come easily; they hover just below the surface of my consciousness.

I see my son through different eyes but it’s not him who’s changed, it’s me. I worry that he’ll pick up my emotions, feel that he’s somehow damaged goods. He’s not. He’s still the same so-sweet, so-smart, so-delightful kid. And yet. There’s something not right.

It’s been out of whack for a long time, maybe from the moment he was born. Maybe it was that excruciating four hours of pointless pushing when he wouldn’t -- couldn’t -- come out into the world. Maybe it was just meant to be this way. Maybe it doesn’t matter why or how, only that it is. Dan says that facing and overcoming adversity gives you a kind of personal power for the rest of your life. People who achieve extraordinary things often have had difficult pasts. If this is Damian’s life hurdle, we’ll all learn how to jump it together.

We’re learning. Already we’re learning. I met with Damian’s principal and his teacher this afternoon (Damian stayed home with Jami, his sitter). We talked about how to make him feel safer in the classroom, not so overwhelmed. We talked, too, about how to introduce him to the idea of friendships, how to help him bond to other children instead of seeing them as strange, unpredictable creatures. Both women want him to stay in school. So do I. If he can be happy there, he’ll be that much closer to feeling safe in the world, that much closer to letting his guard down and opening up to possibilities. That much closer, maybe, to trying to talk.

We saw the speech pathologist Tuesday. She gave no diagnosis, said it would take three months of speech therapy before she’d venture a guess. She said he absolutely needs therapy, twice a week, for as long as a year or two. She took his situation very seriously. Said he’s like a train that’s going down the wrong track, and we have to guide it onto the right one sooner rather than later. She gave us tips on how to interact with him, how to make words feel fun, almost irresistible. It’ll take time but we’re already seeing small signs. So that was good.

But she was a little off herself, trying to be warm to a child but trying a little too hard. The effort showed. And she asked Damian questions but didn’t wait long enough for the answer. And later seemed put out when I pushed her on the financial issues. As if "Well, of course you’ll pay full, everyone does. And insurance is your problem, not mine." She did bend on the pay-in-full deal, but reluctantly. Excuse me, but I don’t want to be made to feel like the indigent beggar sleeping in your doorway because I don’t want to spend $240 a week for the foreseeable future.

Mostly, though, her office is across town. Half an hour in light traffic, closer to an hour at rush hour. Twice a week. Two to four hours every week for Damian to sit in the carseat, quietly thumbing through books. He needs more interaction, more stimulation, not less.

I asked the nursery school principal for a referral. She gave me two. I called the first one tonight. She asked a lot of questions, knew a lot about how to handle the maze of insurance and free programs. She sounded sharp and very present, and said things like "We need to meet, you have to see if you feel comfortable with me and I have to see if I feel comfortable with your son." The right thing to say. She’s not just in it for the money. She wants to give me a book to read on language development, she wants us to set up an appointment with a behavior specialist to analyze Damian further (she's right, I think, to see if this other doctor knows more than a speech specialist would -- the other pathologist didn't think of that -- too arrogant, I suspect). And this one's just a ten to fifteen minute drive away. Damian has his first speech therapy appointment with her next Thursday.

I look at Damian now and I see a child afraid of trying to talk on demand. Afraid he’ll get the words wrong. Or maybe the words aren’t there when he searches for them, maybe they’re right there one minute but then they dissolve on his tongue when he tries to speak. So he's learned ways around the problem. He's become an expert at nonverbal communication. And Dan thinks it’s possible that he has fewer words than it seems, that his book quoting has masked his lack. I think that could be true. He understands the books, and can summon them on command in a way that he doesn’t seem to be able to do with spontaneous speech. He’s using quotes as a kind of alternate communication. My smart boy has figured out how to use books as a tool. A flashlight to light the way into the unknown dark cave.

When he’s talking to himself, he can sometimes sound so articulate, I’m shocked at his silence the rest of the time. But sometimes the words blur; it's like he’s just skipping over the tops of the sounds -- "popcorn" might come out "op-oon". A mound of sound, not a real word. If his ability comes and goes, it would explain his reluctance to talk to us. Though he does love his "yikes!" and "splash" and "crash!" Batman sound effects. Maybe they don’t feel like words?

Sometimes he’ll have a moment of startling clarity that makes me feel like I’ve dreamed the mute pain. Like just now. He was lying on the bed between us, thumping his feet on the bed. He said "up and down." When I echoed him: "Up and down," he sat up. ("Up", you see.) I said, "Sitting up and lying down." So of course he lay down on the bed again and even said, "Go to sleep." Sounds like a normal kid his age, doesn’t he? That’s why we’ve held off getting him examined. But he’s only like this in flashes. Maybe the flashes will come more often now that we’re working (and playing with purpose) toward that end.

This is hard. So very hard. In just one month, I’ve seen just how much Damian is missing, how much we’re missing. And now we’re in the heart of the struggle to change from passive to active, from denial with an undercurrent of fear to a blunt acknowledgement that something inside Damian isn’t where it should be, and that we need to help him make the connections.

There’s a release in this, but also fear. What’s his diagnosis? Will the therapy work? Will he learn, will he open up, will he be okay? Will he be a whole, happy human being, able to live in the world? What does this mean for him? We all want everything and more for our children. I would lose some of my words if it meant I could give them to him. I know Dan would too. You don’t know -- I mean fully, deeply know -- how much you love someone until you see them in trouble. I thought I needed to get Damian over the separation hurdle at preschool as quickly as possible so I could get back to my quiet house and have some quality writing time. Now I know that’s not as important as I thought. Better I stay there for another month. Three months. Whatever it takes. Have PowerBook, will move in. Damian needs me. I never realized before just how much.

Tears on the edge of my vision all the time. Tears of pain but also tears of love.

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