Fighting for Joseph (Part Two: The Battle)

This is the second of three blog entries that will focus on my almost 9 year old son, Joseph, looking at our journey through his autism diagnosis and how God held our family in His hand as we fought for our son.

Though I can look back now and see the date in pictures, I didn't know at the time that our lives had changed. At 22 months you don't pay attention to every glance (or lack of) or word (or lack of) from your child. What we saw when he started spending hours studying the wheels on his cars and the balls in his ball popper was a future in engineering. Why would we be concerned when he seemed more interested in "things" than he was in his family? To us, he was just our sweet baby boy who was questing to understand this big world he'd been born into.

That Christmas Joseph loved bringing me presents. He would drag each box over to me, crawling on my lap as I bent to pick it up. Sitting together on the couch he'd put his hand on mine and guide it to the striped wrapping paper. Over and over again he would move my hand over the present as I counted the stripes.

"My son is so smart," I marveled. Why would I know to think otherwise? (How I wish I had known to think otherwise.)

There was one concern that grew within me in those days. Could Joseph be losing his hearing? My baby who had always turned to my voice no longer responded when I called his name. I whispered, I screamed, I clapped my hands, I banged on the table. The only way he would look at me was if I touched him.

Somewhere during the days when tests revealed that there was no hearing loss, he stopped responding to my touch.

I caressed his cheek, I tickled his belly, I pulled gently on his shirt. Nothing in our world enticed him out of his.

Then one day I turned on the radio. Kahlan wanted to practice her dance steps, so I put in a CD that the kids had always loved listening to. As Kahlan danced, Joseph walked into the room. With a definite intent that I hadn't seen in weeks, he walked over to the speakers and started to dance.

I hadn't believed that the hearing tests results were right. But how could a little boy who didn't hear his mom dance to music?

The words that he had before were gone. There was no more "dada", "mama", "ball", or "cup". There were no more peek-a-boo games. The sounds he did make were repetitive and meaningless.

As our concerns grew, other people's excuses multiplied. "He doesn't need to talk, Kahlan talks for him," and "He's a boy, they develop slower," were only a couple of the many reassurances we were given from family and friends. Every time I got close to looking for help, I remembered what others had said and tried to stop overreacting. Some even went so far as to insinuate that I was trying to get attention for myself by making problems in my son.

One day I had both children in the van. I can't remember where we were supposed to go, but I will never forget what happened when I placed that favorite CD in our new CD player.

Joseph began to sing. He knew every word to every song.

I had forgotten what his voice sounded like. Babbling is sound, but words is voice. It was the most beautiful thing I had ever heard. We drove for over an hour, the CD repeating as my tears fell.

The signs scream at me in hindsight. Having devoured countless books on autism, I now see that Joseph could have been a poster child for the syndrome. But back then, I had no idea. And if I thought I had it rough that day as I parked my van in the driveway and carried my once-again-silent son into the house, I had no idea what was coming.

The meltdowns started. A meltdown in a child with autism is very, very different than a temper tantrum in a typically developing child. If a child is having a temper tantrum because they can't have a piece of cake, and you give that child a piece of cake, the tantrum stops. If a child with autism is having a meltdown because they want juice and you, having no clue what he wants, give him milk, you can give that child juice all you want and it will do nothing to stop the rage. It isn't about milk or juice anymore. It's about living in a body that you have absolutely no control over.

He screamed, he threw himself on the floor. He banged his head into walls while howling in frustration. There was nothing we could do to help him.

I took him bowling one day. I should have known better. I may not have known he had autism, but I knew that chaos brought on meltdowns. He was so excited when we walked in. He bounced up and down in my arms, repeating the sounds he made when he was happy. But when it was his turn, and he let go of the ball, it didn't come right back to him. And that's all it took.

I had him in one arm, twisting and yelling and banging his head against my face. I was trying to get my bowling shoes off and my other shoes on while holding my keys and keeping him from falling to the floor. Everyone in the building stopped what they were doing. The people whose birthday party I was attending formed a circle around me about two feet away. I remember screaming in my head, "Please help me!" but I didn't say a word. This was my life. And no matter what it looked like to everyone else, I knew that Joseph was in much more agony than I was.

As I walked out of the building, a man at the bar muttered, "Spoiled brat."

Joseph and I walked to the van, both of us crying. As I buckled him into his carseat, I said, "I'm so sorry," over and over again. I truly was. Sorry that I had brought him into that building, sorry for the man who so carelessly judged him. Sorry that I couldn't do anything to break my son out of his terrifying prison.

My body was bruised and my heart was broken, but I loved him so much.

Somewhere around this time, the straw broke the camel's back. Steve and I were downstairs one evening when we heard an odd sound. We had tucked the kids in bed an hour before, but it sounded as if one of them was up. Seconds passed, but no one came down the stairs. The sound continued.

I walked to the bottom of the stairs. I will never forget what I saw. Joseph was walking back and forth in the small hallway above the stairway, muttering nonsense to himself. Back and forth, back and forth. Once in a while a strange giggle escaped, but he never looked at me. Back and forth he paced.

I turned to Steve. "I'm calling the doctor in the morning," I said.

Enough was enough.