|sorting it out||
25 January 2001
|How do I explain whats 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 its not him whos changed, its me. I worry that hell pick up my emotions, feel that hes somehow damaged goods. Hes not. Hes still the same so-sweet, so-smart, so-delightful kid. And yet. Theres something not right.
Its 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 wouldnt -- couldnt -- come out into the world. Maybe it was just meant to be this way. Maybe it doesnt 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 Damians life hurdle, well all learn how to jump it together.
Were learning. Already were learning. I met with Damians 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, hell 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 shed 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 hes like a train thats 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. Itll take time but were 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 didnt wait long enough for the answer. And later seemed put out when I pushed her on the financial issues. As if "Well, of course youll 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 dont want to be made to feel like the indigent beggar sleeping in your doorway because I dont 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. Shes 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 hell get the words wrong. Or maybe the words arent there when he searches for them, maybe theyre 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 its 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 doesnt seem to be able to do with spontaneous speech. Hes 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 hes talking to himself, he can sometimes sound so articulate, Im shocked at his silence the rest of the time. But sometimes the words blur; it's like hes 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 dont feel like words?
Sometimes hell have a moment of startling clarity that makes me feel like Ive 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, doesnt he? Thats why weve held off getting him examined. But hes only like this in flashes. Maybe the flashes will come more often now that were working (and playing with purpose) toward that end.
This is hard. So very hard. In just one month, Ive seen just how much Damian is missing, how much were missing. And now were 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 isnt where it should be, and that we need to help him make the connections.
Theres a release in this, but also fear. Whats 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 dont 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 thats 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.
copyright 2001 Tamar