[This post was first published on March 8, 2011. It still gets to me just the same. We don’t have these scenarios much anymore. A sign of how far we’ve come. Yet, I still don’t know what happens to bring them on. I may never know. ]
As parents, we all understand the cry of a child who suffers pain. Sometimes, the child has fallen down with a bump or bruise. We kiss it and make it better. Sometimes, it’s a bloody nose or a skinned knee, a cold or a fever. We use Band-Aids and cough syrup, Tylenol and chicken soup. We make it better. If we can’t make it better, we go to the doctor and the doctor makes it better. The child stops crying, begins to play and all is well again.
Last night, my son cried. He began to cry sitting in the back seat of the car while I was driving on the freeway ride home. It was a soft crying at first, tears welling up, and then streaming down his face. Then, the wailing began. The “ah hhuh-huhh”. The sniffling and running of the nose. Of course, I had no tissue to hand to him. I found a napkin on the seat beside me and passed it back.
He took it and gently wiped his eyes and nose but the crying continued. This is not the cry of a bump, bruise or skinned knee. This is different. It is the cry of a child confused and overwhelmed by autism. A child who cannot tell you why. A small person who tries to get words out and the words make no sense. He knows it. And it breaks my heart every single time it happens.
I let him cry for the rest of the ride home, checking the rear view mirror the whole way. I know he cannot tell me and yet I always ask. “What’s wrong?” “Why are you sad?”
He tries to answer. The first two words come out. I know he is trying. The words are disjointed. Scary. It is almost like a person who has suferred a stroke and who cannot say it, but knows what he means to say. After first words and half of a third, my son is lost. He struggles, cannot do it and cries louder.
I tell him, it’s okay. I know he’s sad. I know he’s trying to find the words to express himself and he cannot.
Then the orders began. Normally, I try to ignore them but because I could not jump out of the car while driving, I relented, probably not the best choice but the truth. I think he may do this to help him regain control of himself in times he feels so out of control. “Mommy, draw the letter ‘O’!” he pleads softly between cries. I draw the letter ‘O‘ in the air with my finger. “Draw the letter V!” he cries, trying to catch his breath. I comply. His crying subsides and then begins in full again.
“Mommy, call the octopus!” he yells. I think about this one. Then, I grab his Winnie the Pooh phone sitting next to me. He had abandoned the purple phone earlier in the ride in favor of the iPad.
“Hello, Oswald?” I asked holding the tiny purple phone handle. (Oswald is a cartoon octopus).
“Hello Mommy and Tootles,” I said, in my best Oswald voice.
“Oswald, are you eating ice cream?” I asked playing myself.
“Why, yes, Mommy, Swizzleberry Swirl, as a matter of fact.” Oswald answers.
Glancing in the rear view mirror, I checked to see if this was soothing or not. He was sobbing instead of crying now. Catching his breath.
“Tell Tootles I love him,” I said in my Oswald voice.
“Oswald loves you baby,” I told him and hung up the purple phone. It did not help. The crying began, again in a huge wave. In between the wails and the sniffing, I heard him ask for a blue car.
We pulled up to the house. I got out and unlocked the front door. He continued crying from the back seat. I walked back to the car, got in the back seat, unbuckled his seat belt and gave him some deep hugs and kisses, patting his back while he sobbed into my shoulder, holding me. He does not want to budge from my arms. After a while, I carry all 52 pounds of him inside. He continues to cry.
He runs to a closet and grabs his blue car. He stares at the wheels. He spins them. He cries. He looks at the headlights. He sobs. He walks out of the closet and slowly makes his way to the bedroom. He lays down on the bed. I wipe his face.
I get out the OT brush. While I brush him, he points to the headlights and asks me what they are, through his tears. He knows the answer. I know he knows. “What are they?” I ask back. “Headlights,” he answers. “What color are they?” he asks again. I ask it back. “White,” he answers. He looked at the wheels again. He alternates between the headlights and the wheels. Slowly, as I complete the joint compressions taught in OT, his crying stops. The whole thing lasts about 45 minutes. We spend some time rocking in a chair, the gentle motion and hugs soothing him, he stares into space for quite some time. I kiss his forehead and run my fingers through his soft hair. The self talk begins softly. Back to “normal.”
The difference from any other parent? This is not just a sad child. I get the tummy aches, the flu, the bruises and the skinned knees too. Just because my son has autism does not mean he does not get all these other things. I recognize the difference between those cries and this one.
This is a child who cannot express what is happening inside himself. He is trapped in there. He wants to tell me. The words fail and he is left alone, inside himself. I am right there and, in many ways, I might as well be a hundred miles away, because he cannot tell me what he feels and what he needs.
The desperation in his voice and his tiny face show me how hurt he is. And all I want to do is make it better, but I can’t. I can hold him and wipe away his tears but I cannot fix what is inside. These are times when autism hurts.
This is the story you don’t hear about at the school district meetings, at therapies, at the pediatrician’s office. This is a short story from the battlefield where autism takes place. I don’t know when or where the enemy will strike or when my son will go down. Sometimes, it feels like we walk through a minefield just to get through the day. Nothing should hurt the innocence of childhood like that.
And, just like that, the enemy retreats. All is quiet on our western front. Songs are sung. Laughs are heard. Hugs are given. But we have not won. We only try to ease the fear of the unknown. As parents, we do our best to soothe and shield and protect. And that is a small part of why, as ASD parents, each and every one of us is a warrior of sorts, with a little scar that serves as our silent unity.