15 March 2001
I never thought I’d drive all that way so I could spend an hour and a half with a woman to talk about my son.
I never thought I’d be whipping out the check book, writing a series of checks that total almost as much as our month’s rent, and for what? Three sessions. About four hours.
But then, I never thought anything was seriously wrong.
So here we were, zooming up a nearly empty freeway on our way to the boonies. Driving down a pleasant California town’s main street, looking for the right building. Pulling into the parking lot of a small, unassuming office building that could have housed insurance offices or temp agencies but instead is chock full of high powered and even higher paid specialists.
As we got off the elevator, I felt my eyes well. I didn’t cry; the tears were stuck in my throat. Two months ago we thought Damian was a little speech delayed, a little shy, a little unusually focused. Now here we were, ready to talk about him for ninety minutes with someone who knows all about autistic children. Here we were, hoping for answers, for a path to follow. For a hand to hold ours as we step onto that path.
Dr. Red (she’s a redhead) met us immediately and led us to a quieter office down the hall. She’s an older woman -- late fifties? -- with a solid body and intelligent eyes in a warm face. There’s nothing affected about her. She reads people, I think. Reads glances and subtext and hesitations. I recognize the alert thoughtfulness. We immediately felt like we were in the right place. Like our child will be in good hands.
She asked questions. When did we first get concerned that there might be something wrong? (Hard to measure -- we gave several moments and the reasons we doubted too.) What was Damian like as a newborn? (Emotionally needy, but not colicky. Very alert.) Does he look at things out of the corners of his eyes? (Yes.) Does he stare fixedly at lights? (No.) Does he come from a different room when you call his name? (No, but he does come when you tell him dinner’s ready or it’s bath time.) And so many more questions. We talked. And talked.
She wasn’t trying to figure out whether Damian is autistic. She took for granted that he has issues or we wouldn’t be there. She was trying to determine what exactly those issues are. Dan told how, when he comes home from work, Damian is joyous and runs over to be picked up, but then sometimes just before he gets to the front door, he gets sidetracked by his toy box. She said that could be a slight motor planning issue; he has to think about the sequence more deliberately than most kids and can therefore get thrown off course more easily. We can help him by breaking down the steps for him (or maybe in this case, reminding him of the next step when he forgets).
She asked how he holds a pencil. I told her that I’ve watched him hold a crayon or marker at an angle, which makes it harder for him to press down on the paper. I’ve seen this, too, when he tries to push the car key in the door. He first tries to get it in at an angle, then straightens it when he realizes that doesn’t work. She suggested we use the hand-over-hand method and guide his hand into the right position. Sometimes that’s all these kids need, they have to know kinesthetically how it feels when it’s right. Her words triggered a memory: A few weeks after we started the Mommy & Me program last year, I got frustrated that Damian wasn’t following along with the hand-clapping, feet-stamping exercises in circle time. So I did it for him. I raised his hands in the air, I guided him to touch his toes, etc. The teacher scolded me after class, saying I shouldn’t force him to do something, that he’ll do it when he wants to. But I wasn’t forcing him, I was helping him. And from then on, he did the exercises (with clear pleasure at his accomplishment). This is also more recently how we got him to start waving goodbye more consistently, though he still waves with his palm facing himself. We can teach him to turn it around the same way, I’m sure.
It was a huge relief to talk to someone who could help us gain insight into the way things feel for Damian. We’ve never been able to get him to brush his teeth, for example. He gags and has even thrown up just watching us brush our own teeth. Dr. Red suggested we put toothpaste on our finger and rub his teeth, he may be gagging at the thought of the sensory overstimulation of the toothbrush on his gums. Oh. Of course.
Seeing her, hearing her ask the right questions and have answers to our puzzles, it all underlined the complex emotional truth. It’s a blessing to know the right way to look at Damian’s issues. It’s a concrete step toward helping him make sense out of the world around him. It’s a confirmation of the struggles we’ve had since he was born, the ways in which parenting seemed so much harder for us than for our friends even though we could never pinpoint exactly how, since he’s not obstreperous or violent or overly fussy and irritable. He’s just needed more from us. So yes, it was a relief to sit there in her office, to talk and listen.
It was also a sadness. I think there was an irrational little girl "make this bad dream go away" part of me that wanted to hear Dr. Red say "What are you two doing here? Your kid doesn’t have a PDD! Go home!" But this is no dream, this is Damian’s life and our challenge for the next who-knows-how-many years. It can’t help but make me sad that we have to stop measuring his development in comparison to his peers, we have to just look at him now in comparison to him three months ago, five months ago, a year ago. This burden is ours -- and his -- to carry, and that hurts like a jolt to the solar plexus.
But we won’t be carrying it alone anymore. Not after we get every piece of treatment and support in place. We’ll start Damian on occupational therapy soon, we can check in with a (play?) therapist who specializes in floor time, who can help us finesse our technique to suit his needs, and someone who can help Damian learn to separate from me. Dr. Red said, "How wonderful that he’s that attached. Imagine how it would feel if he never noticed that you left the room!" But she also said that it’s better for him and certainly for me if he can learn that life is still okay when I’m not hovering nearby. On some level, he knows he never has to really push himself because I’m always around to help him out of a jam. She thinks this person can help wean him from me enough to give us both breathing room.
I almost cried when she said that. I’ve had this rope tying me to him from the moment he was born. He nursed around the clock, he fell asleep on me for naps and woke up the moment I set him down. When separation anxiety hit at ten months, it hit big and hasn’t ever really gone away. If I disappear into the study to exercise when Dan’s watching Damian on a Sunday afternoon, more than likely I’ll come out to find a video on. Damian came looking for me. Thomas the Tank Engine can make Damian forget his Mommy fixation for a few minutes. These days it’s even worse. I sit at the dining table while Kim, the new babysitter, is here. Damian checks in with me at regular intervals. If I go into the bedroom, he panics and comes to find me. He recently had a bath phobia. How did we solve it? I came into the tub with him for four days running. He won’t let Dan rock him to sleep anymore -- not unless I’m in his bedroom with them, and sometimes not even then. No, it’s Mommy or I Stay Up Forever. At school -- well, we know what it’s like at school. I’m still in the damned classroom every single fucking day, aren’t I?
I’m his home base. I’m the one he knows can understand him. I’m his comfort object. I’m the person who defines "home" and "safe" and "comfort" for him. It’s exhausting being that person. If someone can help him feel more confident on his own, god, my life would change overnight.
Dr. Red also said we might want to consider switching schools, that it would be ideal if Damian could be in a classroom with typical kids but where they implement Greenspan-style floor time during the course of the morning. He should be in some form of therapy every minute of the day. If the school can’t provide the kind of interaction he needs to grow, it’s three hours a day of wasted time. I agree wholeheartedly, but I can’t imagine a perfect classroom for him outside of the Land of Oz. If you throw him in with other autistic spectrum kids, he’ll be the most high functioning among them and will learn nothing from his peers, nor be challenged to interact with them. If you throw him into a regular classroom, even with an aide, he’ll be losing the floor time sessions. Dr. Red said she’ll come up with a list of integrated classrooms for us to check out. I hope we find the portal to Oz somewhere on that list.
She gave us some floor time tips, too. The big one for me: don’t be afraid to push him, don’t be afraid to upset him. The point is to get a reaction, even if it’s a negative one. He sure has a lot more words when he’s upset, I’ll tell you that. He says "I’m MAD!" and "I want!" and "nee" (need) and "no!" and often a long string of words we can’t quite make out. And all aloud, too. Lately he’s been talking in whispers except when he’s mad, and then he forgets his self-consciousness and talks full volume.
All of a sudden, I find I don’t mind pissing him off. Just a little. Just enough to wake him up. If he wants a toy to go just so, I’ll put something on it to screw that up. He has to deal with the mess and tell me to cut it out, to boot. As long as we do it carefully, with intent, and only in context, I think it’s fine. And we give him lots of love even through his peevishness.
We’re not done with this evaluation: we bring Damian to visit next Tuesday and all get down on the carpet for some floor time. Dr. Red said, "I’m looking forward to meeting him; from what you said, he sounds like a fun kid."
We said, "Yes, he’s a sweetie."
I was glad she saw that in our description of him.
I gave her a printout of my Day by Damian entries -- all one hundred forty something pages of them -- and the monthly wordpix I used to write for Damian’s (sadly out of date) photo album. She’s got some homework. It felt so strange to give her the pile of pages. I wrote some things that sound so painfully naïve now. The words now shout out my resolute state of denial. And god only knows (I haven’t read through it completely) how much she’ll find out about me from the words I wrote about our lives.
I don’t know why that feels more naked than the knowledge that total strangers come to this page and read my emotions in the words I type. Maybe because the total strangers are getting a more complete picture. Maybe because I don’t hand a sheaf of pages over to you all to analyze with an expert’s eye, alert not only to the child’s development pictured therein, but the parents’ role, both positive and negative.
But who better to strip in front of than this woman, who may be able to help us figure out how to change what we’re doing, how to get the most bang for the buck for our little boy? Why not show her every wrinkle, every pimple, if that helps her help us?
More tears in my throat all the way home and most of the evening. Relief, hope, frustration that we can’t start the whole program right now this second not a moment longer. Wanting results yesterday, wanting to pushpushpush that boy right into happy socialization and full communication. Wanting, conversely, to curl up in a ball and go to sleep for a year. Wanting someone else to be the grownup. Wanting to be strong for Damian. Wanting to be everything for him. Wanting some relief.
My fragile little soul of a child will be okay. Dr. Red concurred even without seeing him. She said of the kids who already have language when they see her, ninety percent go all the way to full engagement. And I know he’s got more than language.
But oh, the work.
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copyright 2001 Tamar