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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.


Saturday, March 7, 2015

Exclusion is A Sin (even though I hate that word)

Copyright 2014, Amy Aves Challenger 
“The problem isn’t your special needs son. The problem isn’t any of the people who have left you out. The problem isn’t anyone in your family, Amy. The problem is you, he said. His blue eyes seethed through the tiny horizontal slots above his red cheeks. His forehead tightened as he continued, “I’m trying to tell you this in the most Godly way…You make people feel inadequate. They aren’t running from your son, they are running from you.” His voice sounded raspy. He had transformed into a different man than the one who weekly proclaimed the good news on the pulpit. No one would believe it. There was no grace. No mercy.

The pain in my gut almost doubled me over. I felt like my pastor had taken a bat to my head and was swinging it over and over. I felt that he had punched out my insides. This man who I had so blindly followed was enjoying this, it seemed. I sobbed as we walked down the hill along a gorgeous road in Marin County.

I had just told him why we were leaving the church. I had wanted him to know our truth, despite the fact that he had avoided me for weeks. My husband hadn’t understood why it was so important for me to talk to him. To tell him our story. But I wanted the church that I had loved to know. I had naively believed that he cared, and that the church would grow from my dirt— they could learn from our pain. So we went on a walk together to talk.

We had to go, I had explained. Even though we felt connected to many people at church, and it was painful to leave them after three years... We had to go because our son had been excluded by moms and by dads. I had been involved with many women’s groups and had felt connected to more than a few moms whom I regularly talked with (still do today.) I had hosted church events at my home and had been active as a volunteer. But when it came to family events or play dates, we had been excluded — for years. I had asked moms come over with their kids, and no reply would come. There had even been a time when a church mom had told me, point blank, that everyone felt afraid of my son. (Often we had had an aide there with him.) Everyone found him a distraction in Sunday school, she had said. He made it impossible for the other kids to worship. Who could blame her for being honest with me, she had asked (as I cried once again on the other end of the phone line.) One woman at the church had slapped my son’s hand when he became over-stimulated at a faith group I had been attending. He had run out crying with me following. And we had recently learned about a group of families we had known for years who had been meeting regularly for dinner and fun, but had excluded us. (Although they had once invited us to an event where kids were not included.)

But we kept going to church. We needed community that badly.

Watching the exclusion growing, like a bacteria, had become too painful. It felt like the ultimate hypocrisy in a place that worshiped Jesus. I explained that we weren’t leaving because of the new assistant pastor who had glared at my son with disgust weeks before. I had confronted that issue directly, though receiving no response. (My pastor described me as a great finger shaker because of the fact that I confronted issues so head-on…He had a good point.) But that one man wouldn’t have made me leave. Nor would the fact that our senior pastor, this man I spoke with now, wouldn’t meet with me without asking permission from my husband first. I had (shamefully) overlooked that. We were leaving because we couldn’t continue to worship God in a place where we felt that differences were not embraced. My husband had particularly become focused on the fact that women could not hold any leadership positions at the church, and homosexuals were not accepted as legitimate if they practiced their sexual preference. My husband had been more compassionate that I. More able to see how these two issues, the inability to treat women and gays as equals, linked directly to the fact that our special needs son had been an outcast in our church community since we had set foot there.  There was a reason we didn’t fit in. Differences were feared. Even hated, I realized as I looked at my pastor’s blazing glare.

I brought up a close friend from the church, who happened to be a pastor’s wife. “What about her?” I asked. “She didn’t run from me. I don't think I made her feel inadequate. We have become so close.”

“Yes, well, because I have encouraged her. I did that for you— to try to help you.” he said, taking credit for the friendship, his chest grew noticeably as he peered down at me from high above, showing me that he had manipulated the whole thing. That too had been a sham.

I gasped and choked. A fake friend. Pressured to be there. I pictured her showing up at my home early on in our friendship with an uncomfortable look. Forcing her boys to play. Suddenly, I felt alone again. Like so many other days as a mom. Misunderstood.

For a fleeting second I felt angry. “You don’t even know me. You never bothered to get to know me except when you wanted something from me. Wanted me to volunteer.” I said, picturing how he was always focused on my husband. How he would treat me like a distraction. 

“I know you from your blog!” he proclaimed (referring to this blog.) “I know you from your emails!”

It was the ultimate irony. My pastor judging me—based on my online presence.

As I sobbed uncontrollably, I tried to picture how I would hold it together that night. I hadn’t slept much in days because of my chronic insomnia. I had been fighting off depression. I had wanted to tell this inflated man who called himself a church leader, that by striking me down, he was making an already impossible job more absurd (mothering and homeschooling a boy who was completely out of control and friendless, plus mothering two other kids who needed me desperately) “If you really knew me. You wouldn’t say these things. If you had taken the time…you wouldn’t want to destroy my self-esteem this way,” I said.

“Your self esteem?” he laughed. “Do you really think your self esteem is what is important to me?” he screeched. It looked to me like flames were bursting from his teeth. They seemed to shine and reflect off the pavement. I thought he might explode with ironic fury. Self Esteem was the enemy to him.

He thought he was pointing out that I believed I was more important than God. He didn’t understand that my self-esteem came from God (and still does.) It was my center stone, even if I didn’t recognize where it came from at that moment. (If I had, I suppose I wouldn’t have worried about losing it.) God, my self-esteem, was what sheltered me from men like him.

I suppose that was why the pastor wanted to destroy it.

It was then that my faith ruptured. Not my faith in God, but my faith in church. (Don’t get me wrong, I still go to church, but my faith is NOT in the church or any leader within the walls of a religious institution.) My faith in blindly following men— dissolved. My faith in believing that I deserved to be blasted for all of my faults…that I was really THAT bad… that my son was really THAT deserving of all that he got (because of me, of course)— it all disinigrated. That day, that man, transformed me, forever.

I ended up walking down a different street and never speaking directly to that pastor again. I shook and coughed and cried loudly (and embarrassingly) as I roamed the sidewalks of San Anselmo finding my way back to my car. (One young man even stopped me and asked if he could help.) I drove toward home in a daze and stopped at a trail because I couldn’t show up at my house, upsetting my family in my state. I ran up a steep rocky hill. I wanted to find something. Find the end of myself, maybe. I sort of wanted it all to end, right then. I felt suffocating disillusionment and disappointment. I couldn’t believe a church leader could want to cut me that deeply when I was already grasping around in the dirt. Kicking me when I was rolling around in the dust. Slicing me up knowing my strength meant much to the survival of my family.

But in the end I learned that walking away from those who hurt our kids (and therefore hurt us)…it is so RIGHT. Facing the exclusion, and staring it down, did HURT like fire under the fingernails. Like rocks in my teeth. It scorched my insides. Not a pretty sight. Losing a whole church community was no fun.  But in doing this, our family made way for new growth, new life, new faith. A whole new community. We took the leap. We made new friends. Our faith grew bigger than before. 

This post may sound too raw. It could offend someone. If it does, I am sorry. May I be forgiven for the ways that I misunderstand my own glaring flaws and misread the intentions of others. But this story is my truth. I felt kicked, mocked, and scorned by my pastor and also by other people related to that church. But from that horrible experience, I was blessed. I was reborn.

I hope that my story empowers other moms and dads out there who are struggling to find community for their children, for themselves, for anyone with differences. I think exclusion is a sin (and I hate the word "sin.") I hope this story helps people who are craving the path to their own faith. Maybe faith comes when we fight for it. And love comes for all children when we demand it. And God is revealed when we clear away the people, the things, and the hatred that distracts us from Him.

Finally, maybe honesty frees us to see the holiness, the light, and the truth in our children, in ourselves, and in each other.