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Tuesday, March 17, 2015

If It Were Autism

"Have you considered that your son could be on the spectrum? Perhaps Aspergers, if that were still a diagnosis.” Our sixth psychiatrist asked, eyes intensely questioning us, through black-rimmed stylish glasses. His foot bounced a little.

He spoke delicately. Like the idea might scare us.

My insides laughed, almost hysterically, while my brown painted lips were silent, my posture upright and serious. My husband fidgeted in his creaky seat, but was otherwise quiet.

I was not scared. I wanted a label. Autism. Everyone knows that word. I wanted to have a word that would somehow tell the truth about how I believe it feels to live and grow and suffer inside my boy’s body. To tell how it hurts, daily, to raise a kid this way. How hard it is for a brother and a sister. Maybe a word could be the bridge to love for more boys like mine. A word that could help more families who are suffering. A word like autism might make more people reach out, ask my boy to play. Maybe a word would make more people care.

I pictured the years of strangers, teachers, moms, kids, relatives. Angry sharp boulders in our way. People who had not been able to embrace my now 9-year-old boy. They were afraid.

It wasn’t their fault. He didn’t have the right label. And he was sometimes aggressive. He was spinning through life, assaulting the air.

Sometimes he looked so NORMAL. I should have been grateful for that. However, observations of normal further pressed me into a lonely Crazyland. “He looks fine to ME.” (So why in the world are you acting like you can’t go anywhere? Can’t travel? Why do you talk about him, write about him, think about him so much. What is WRONG with you?)  “He’s just a BOY.” Yes. Right. I nodded my ponytail which ached from the shoes that hit it minutes ago on the drive to the park. My ears burned from the previous high-pitched hysteria that had again caused me to pull the car to the side of the road. Later I carried his long body out of the park, kicking and screaming— again. Normal?

Normal is a stupid word. Normal did not help. I needed hugs. Lots and lots of hugs. An invitation to be part of some community, written in cursive, chalk, maybe hieroglyphics. Any God damned language. An autistic community inviting us somewhere, anywhere, would have been just fine.

“Can you just tell him to OBEY? Have you tried letting him get LOST and see how he feels THEN? That will stop him from running!” (They chuckled.) Have you tried PUNISHMENT?” said the wagging fingers.

“You’ve got to prevent it. Prevent it from happening,” the therapists said, referring to the hits, the tantrums, the objects that sailed across the kitchen table. “You need to recognize the triggers and then prevent the behavior.”

I had often looked like a helicopter, a palm reader, a really clumsy apologetic magician. Searching for triggers. My scattered brain had attempted to decipher the signs, my flailing arms prepared to stop the next problem. I bobbled around, a wound-up top, ready to spin toward the next disaster. Watch that plug, watch those stairs, watch that ball, watch that road, watch that large body of water. Watch that little girl screaming in his face. Watch that kid who maybe could have been his first friend. Watch him run away…

I didn’t sleep.

Sometimes we just hibernated. For weeks. Months even. We made a cocoon. It was the only way to survive.

Sometime the world outside the door hurt too much. It blinded his eyes, assaulted his limbs, tore into his skin and ears, vibrating through his head. He fell apart.  So we did too.

Leaving a home or entering a different room had been unsettling enough to make him kick his brother or hide under a chair screaming. The wrong shirt could have caused him to shove every loose object or person in a room, or in a store. The disgusted look on your face could have caused him enough confusion to run really fast in circles, giggling, seeking peace— somewhere.

Maybe a word would have made a difference. Autism.

But he also could have told you a million facts, he could have played you a concert on the piano. His handsome smile could have melted your ice if you had looked past the other stuff. He has been so confusing.

My boy has been different.

My boy has been hurting.

My boy has needed a label that would explain. Autism maybe.

I recalled the teacher who ran a “social school” at her home called All Children something-or-other. I begged her for help. My son didn’t have friends, didn’t have a school. We were home-schooling after giving up on other options. She promised to fix his problems. (I should have been suspicious, but I was desperate.) She let us in. Then I told her what it was like for us. The frantic behavior at home. In the car. Toward his siblings. Our pain. Our loneliness. My honesty rose up like a beast. It turned around, scraping me with its claws in the form of her response that went something like this,

“As of 10:00 AM today, your child is no longer allowed on my premises. I will have no contact with you or any of the professionals helping your son.”

Our psychotherapist wrung her hands, saying something like, “Never seen such awful treatment from a childcare professional!” Over voicemails, I pleaded with the teacher to allow my 6-year-old to see his new (only) friends just one more time. To say goodbye. He hadn’t hurt anyone. No response. None. He became depressed. I called again. No response. She called Child and Family Services.  They called me. I had just pulled into the library with my kids.

The voice on the phone said something like, “Mrs. Challenger, can we set up a time to visit your home and speak with your children. Someone has accused you of….” throat clearing, “neglect.”

I turned into a rock. Tiny, hard, scared of everyone. The woman who visited our home asked my children if they felt safe. Like they could be taken away. I barely felt my body anymore. After she asked questions, I watched the woman back out the door, smiling, apologizing. She felt sorry for us. She said she couldn’t think of anything more we could possibly do to help our son, our kids. The nanny, the therapy, the special rooms, special toys, special music, special yard, home-school teacher, seemed like more than enough. She made me feel great. Isn't that funny? A visitor from Child and Family Services made me feel great. She told me I was a good mom.

But none of it was enough. (Maybe a label would have made a difference?)

There were still the wagging fingers. More blame.

And when I talked about the fingers, they wagged some more. I sometimes wondered if they would wag until I went insane. Back and forth, back and forth, back and forth. Like ticking clocks. 

I cried. A lot. I felt so alone.

Then, during the past couple of years, something miraculous happened. We found real friends, loving teachers, wonderful support. Maybe because of our honesty. Maybe because of the crying. Maybe because God decided we had had quite enough. One day people just started to listen. They shook their heads. Gave us hugs. Prayed. They told us our world is, in fact, real. Not anyone’s fault.

What? No child, no mom, no dad, no drug, no doctor, no food, no God to blame? Could this be, simply, my boy?

Maybe it is autism.

Thank God for the hands, the smiles, the ears that hear us and heal us today. Thank God for my son’s friends. He only needs a couple. They are my proof that miracles exist. They are rare stones, holding down the parts of me that might float away without them.

My ridiculous hope from this slightly sad story is this: that millions more special people, like you, will hear these words that I am scraping from old wounds. And then you will find the families who are STILL alone and suffering. You will see the boys and girls who are misunderstood and confused and lonely. Friendless. You will love them.

And millions more will heal.

If this truly is autism, (And when will we ever really know?) I will not be sad. I already knew my son was in tremendous pain. I knew his symptoms. I knew his struggles. But maybe, just maybe, just the right word will help YOU understand.

And so I pray for my words to make miracles happen. For kids with autism, ODD, ADHD, PDD-NOS, bipolar, SPD, whatever GOD DAMNED THING YOU WANT TO CALL IT.



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