Autism Diaries – part four
October 26, 2009
I called the Regional Center today. It is an organization that provides help for families with kids who have special needs. I got a worker assigned for Nicholas. I described his symptoms and we used the word Autism and Autism spectrum a few times. It was all so civilized.
Numbing the affability with which we discussed this thing that changed everything. Each time my eyes filled and my heart squeezed. But I pressed on. They said they will help me with evaluation and diagnosis. But, I hung up still in limbo. Aware like yesterday that things are terribly wrong for him but having no real name for it yet. I knew like the pain of a phantom limb that is no less real just because it’s not seen that it will be what I fear.
I cried in the car twice today. I am afraid sometimes and walking around in a mild yet all pervading form of shock. I helped Brittany decipher Julius Caesar and I made dinner. Normalcy is what I sought for this day. Sometimes I am angry at Nicholas. The noises he makes hit my always sensitive ears and move to my spine before crawling to my brain and trying to latch on there like a cancerous thing. SHUT UP, I think shaking with anger. I am always horrified and repelled by myself, a mother, who could think a thing like that. Escape I think. Run away. Run away! And the anger that is really just fear in a muscle suit will sweep over me and blind me for a moment. WHY my mind screams. WHY, my body trembling with the power of it. I confess my mind drifts to anger at Paul. I wonder why, why did we risk this pain? And I want to blame him. For some moments, quietly, I do. Anger burns thick and hot tasting like copper in my mouth. If I let it, I know it will roil into a rage. And spill out of me and maybe it’ll never stop. So I breathe it back and down. This is not how I want to feel. I won’t allow this, I tell myself. This is happening to us. Not just me. It’s our dream that has been crumpled at the edges. Not just mine. I breathe out the pain. Smile at Paul. Ruffle Nicholas’s hair as I walk by. Escaping to the door to feel the sunlight on my hair.
I went to my meeting. I laughed and smiled and did my part. I am there and yet I am not. There is one moment that my body gets away from me and I lean in and let my head rest for a tiny second on the shoulder of a friend. Just barely brushing there eyes closed while I take a breath. I saw him see it. He looked down with a surprised soft compassion but thank God he said nothing. None of the people in the room saw. Nobody there would have guessed that I am trapped as one behind glass afraid that if I am touched even very lightly I will shatter again.
I realized later that night as my eyes drifted shut and I was about to fall off to sleep that I think that I have always believed, in that hazy comforting unformed not acknowledged or looked at closely way that allows those kinds of beliefs to exist, that families with special needs children must somehow love them less. Expect so much less. Hope for less. And that they must wish every day that their kids had only been born normal. Like Johnny or Sue.
My eyes popped back open and I searched the patterns on the darkened ceiling, the tree branching shadows drifting with the wind, caught and lit by the moon. The shapes grew fuzzy with my watery tears. How stupid of me! Oh, if it were only that easy! If my heart could make space between itself and the pain that way, how much simpler it would all be. How very naive of me. Yes, there is nothing so big and yet so small as my desire to hear Nicholas say “mommy”. I long to unlock his words. And I do wish he didn’t draw the stares of others and their shit eating self satisfied recognition and quick “thank God it’s not me” dismissive glances with his grunting sounds, tiptoe walk, and soft flittering beautiful butterfly hands. But, I certainly do not love him less. My hopes for him drift no nearer the ground because of that. I wouldn’t change one thing about Nicholas to have him do all of those things if it meant losing any of the things I love. I love that little boy.
My heart does ache but not in the way I always thought the hearts of parents with disabled kids do. My heart aches because it’s a long scary road. There will be so much to do and learn. Shocking and fearful that God made me the navigator. I hold too much in my hands. And I desperately want the best. Because I love him so much it hurts.
It was a long time before my tears would stop. They rolled fat and soft into my ears and made my pillow wet. I felt every ounce of pain there making its way through me in the tracks against my cheeks. There is no buffer. There is nothing to soothe me these days. No drug, drink, or substance to help me. I must rise up and find it within myself. The tears are the only softening things to touch my skin. For a long time I lay there holding myself still, I’ve been doing that a lot lately physically holding onto myself, and harnessing my breath so as not to disturb Paul who sleeps beside me. I lay like that holding myself still before I too finally drifted off. Eyes shutting down on a last vision of the shadows on the silvery ceiling, on a sighing breath, my heart still lost deep in the hollow ache that just won’t let up anymore. I drift to sleep with it and it wakes every morning right along with me.