By Kristin Youmans
“This child has autism.” That’s what she said. “This child.” My child. My two-year-old little boy with blue eyes so bright they look like they have backlighting. “Has autism.” As if he’d caught a cold, and not a life sentence. My brain went hollow, all thoughts and questions and hope, silent - stunned. She expected me to break down and cry. She held her breath and waited to see what I would do. Her glasses reflected the fluorescent lighting and I couldn’t see her eyes, only the two reflected orbs of white neon staring back at me. The word echoed through the room of the “evaluation” office that was filled with children’s toys my son was wandering through but not playing with in the correct way, according to their scales. My son’s pediatrician had recommended that I take my son to be evaluated because he wasn’t picking up language at the rate most kids do by age two.
I didn’t know what to do. So I pretended that I hadn’t just had my soul pulled out and murdered and decided to remain as calm as possible. Maybe I was just misunderstanding her, “Okay, autism. When I think of autism I think of Rain-Man. That’s not my son.”
She and the other “specialist” began pelting me with descriptions of what autism is. It felt like having darts repeatedly thrown at my body from all directions:
“Inability to understand emotion.”
“…not interested in our world – autistic people live on their own planes.”
“They don’t pick up language – that’s usually the first sign.”
That night in bed I tried to watch TV to keep my mind empty. It wasn’t working. I got up and poured a big glass of wine. I sat in front of the television and still the word “autism” kept repeating louder and louder in my ear. I didn’t know what to do with that word. I couldn’t fix this with a pill or an ice pack. I couldn’t even hope to change it. My baby was hurting in the most profound way possible and I had no way to make him better. I knew that much.
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When I was a little girl, about four, I would play hotel manager. Not house – not wife or mother, but hotel manager. I had a play cash register and I would take the guests money and assign them to their room and play all kinds of scenarios in my head about which guest would end up in bed with which other guest. I don’t think I knew what they would do once in bed, but I figured it had to be something good. Once everyone was checked in I transformed from front desk girl to a guest. I was always a beautiful foreign woman (French probably) who had a lot of money. I probably always wore big turquoise earrings. I was fabulous.
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Autism. Autism. Autism. I read and read and read. I spent weeks reading every book available that said anything about autism. I wanted to know everything there was to know about it. I wasn’t searching to learn about my son’s problem, I was searching for a way out of it. I was looking for things about autism that my son didn’t have. I watched him constantly. I was perched on the edge of a cliff that always ended in the hopeless cave of autism. He would pace and I would say, “Oh, that’s it. She’s right. He’s autistic.” And I would fall off the cliff.
I felt compelled to tell everyone that I met that my son didn’t talk yet. I never mentioned the autism though. I never wanted that look of pity or that awkward silence where they wouldn’t know what to say to me. Everyone I talked to had a nephew, or a cousin, or someone they knew who didn’t talk until they were three or four. This was comforting. But there were things beyond the lack of vocabulary that twisted my gut.
Once a woman said to me, “Just trust your gut. It’s always right.” I knew that. I just didn’t want to admit that my gut was telling me something I didn’t want to hear. He doesn’t talk. He doesn’t say mommy, daddy, or anything really. He speaks in a language all his own. He rarely makes eye contact, and he’s generally unaware of his surroundings – he’s wrapped up in his own mind. When strangers attempt to talk to him in public, he doesn’t notice. They always look to me, and I don’t look back at them. I don’t feel like explaining.
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When I was about 8, in a video store with my parents I wandered away and found a movie called “Angel”. It was about a beautiful woman who was a hooker by night, and something else by day that I don’t remember – a student maybe. It was the hooker part that stuck out to me. I figured that that being a hooker wouldn’t be all that bad of a job. You could have sex, which everyone seemed to really like, and you could get paid for it. What’s wrong with that? Though I also thought being a nun had its bonuses too, nobody messes with nuns – they can do whatever they want and people won’t question them. I was into watching “The Flying Nun” reruns at the time obviously. I figured that could be my day job - nun by day, hooker by night. It was the best of both worlds really. I had high aspirations.
The speech therapist was at my house. This was the same woman who told me that he “had” autism. She was holding him down in her lap and trying to force his hands to do the - put the ring on the stick - game she’d brought with her (how this helps autism is still a mystery to me). He was screaming so loudly that he’d reached the point where there was no sound. His body was arched – one big muscle, fighting to get away from her with every ounce of his being.
Every nerve in my body was standing at attention. My adrenaline reached a point I felt I could black out. She was repeating in a sort of crazed voice, “Put the ring on the stick Jeffrey.” He fought and fought. I stopped it. I stood up, pulled him out of her arms and walked him upstairs to his bedroom. He lay on his bed and cried, calming down.
I walked down the stairs. She began to stammer about something else that he needed, or that I needed to be doing. I told her to leave my house. I didn’t say any more than that. Whatever else she said I ignored. The blood flowing in my head was louder than her voice. She left. I slid down the back of the door and sat. I couldn’t move, couldn’t think, and couldn’t breathe. I was failing him.
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When I was ten I thought my uncle Rob knew the secrets of the universe because he would take me hunting for fossils. We would hike through the foothills of the mountains and at certain points, low points, he would stop and we would start digging. We found rocks on which you could clearly make out ghosts of seashell formations on their surfaces - in the middle of the desert. He would tell me the history of the land and how it all used to be an ocean. He’s a geologist.
That Christmas Eve my whole family was together. My cousins were whining about wanting to open presents. I sat quietly, trying to seem mature – above wanting silly things like presents.
When the adults gave in and the rest of the kids (all boys – I’m the only girl) were tearing into their gifts like a pack of dogs on a fresh kill, my uncle handed me a present and smiled. I looked up at him, and tried not to act too excited (I had a reputation to think about).
I opened it – a book on Astronomy. He knew I loved the stars and had decided that when I grew up I wanted to be an astronomer. My parents laughed at me and said things like, “okay, this week an astronomer, and next week it will be a lawyer or veterinarian again.”
His gift meant that he took me seriously. I read the book cover to cover. I spent nights in my backyard lying on the diving board, staring up into the stars, learning everything I could – dreaming about being an astronomer - but mostly about being “grown up.”
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I stood up and looked out the peephole to make sure the speech therapist was gone. I half expected to see her staring back at me through the peephole with a crazed look in her eyes, like something out of a horror movie. But her car was gone. I walked across the hallway to the staircase and felt the room dim and brighten, as the blood surged through my brain. It was like all of my emotions were trying to squeeze through my heart in that moment. All of my worry, all of my pain, all of my self- blame and frustration had reached the peak. I was doing everything “they” told me to. I was following all of the rules and it wasn’t working. It was making things worse. Any light at the end of the tunnel turned out to be a mirage.
I walked up the stairs and opened the door to Jeffrey’s bedroom. He was lying in the same spot I left him in crying moments before, asleep. He was exhausted. My heart stopped and felt the squeeze that I always get when I look at him. He is the most beautiful thing I have ever seen.
I was lying in bed next to my husband three years after we were married – officially grown up – I had a husband, a job, a mortgage and dogs – I was fully cooked. He was snoring so loudly that I couldn’t sleep. Something felt like it was pulling on the back of my spine – a thought that refused to exit my brain, so it traveled it’s way down my back and made camp, unwilling to give up.
I couldn’t ignore it anymore. I got up and dug the pregnancy test out from underneath the sink. We’d decided to start trying to get pregnant maybe two weeks before. I wasn’t even late. But I knew, so I sat and aimed at the stick – following all of the directions.
Waiting. It says to wait three minutes. Yeah right. I stared at it the whole time, watching to see what it would do. Two lines equals pregnant. One line not. The first line appeared quickly. Then, just as quickly a second line appeared. I checked the directions again. Yes, clearly it said two lines pregnant one line not. I had two very clear lines. I waited the three minutes to see if the second line would disappear, change its mind. It didn’t. The overhead light felt like a strobe, blinking on and off with the throbbing of my brain.
Dizzy. I walked back into the bedroom, looked at my husband snoring happily. Why is it that men can fall asleep so easily and then sleep uninterrupted?
I couldn’t wake him up – too anticlimactic. I knew he was going to be ecstatic but still I couldn’t bring myself to tell him then. I needed to hold onto this knowledge and keep it all to myself for a little while. I got into bed. My heart was beating so hard my head felt like it was bouncing up and down on the pillow. I was happy. But then, after I thought about it for a minute I was horrified. Me – a mother? I couldn’t even keep my own bedroom clean, how was I going to be responsible for a life besides my own? What was I thinking? I needed to quit smoking – right then. I needed to be someone else completely. My life was over. MY life was no more, now I was two. I didn’t know if I could handle it. For the first time in my life I was actually truly terrified. I lay silent, unable to sleep as I stared at the ceiling.
At some point my body gave in and I slept – at least for a few minutes. In that time I dreamt that I was at a huge dinner – with my entire family even my grandma who’d died my freshman year of high school. We were seated at tables covered in white tablecloths and at some point during the dinner I looked under my table and found a blue eyed little baby boy smiling up at me from a carriage. I decided that I would pretend he was mine so I could keep him.
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Tears fell as I watched him sleep, unaware of the turmoil already surrounding his short life. I heard the door open and the dogs start their happy dance for my husband getting home. I walked down the stairs, avoided looking at him – I couldn’t talk without screaming. I grabbed my keys and passed him in the hallway his voice trailing behind me, “What’s wrong?”
I got in my car and tore out of the neighborhood – past all of the perfect cookie cutter homes with competing perfectly manicured lawns – past the jogging trail with the perfect families holding hands and pushing strollers after dinner. I thought about driving up on the sidewalk and slaughtering them. I wanted to inflict as much pain as I felt.
I never wanted any of this. I never wanted to be married, or have kids – how did I get here? How did I let this happen? The neighborhood faded into woods, and I just kept going, without any clue where I was going. I drove as fast as the curves in the road would allow. I wanted to drive so fast that I could burst the bubble of my life – somehow stop the walls from closing in.
I was getting lost, on purpose. My phone rang. I looked down at the number – home. I threw the phone to the floor, wanting to break the tether that dragged me back. I looked up and saw a tree in the headlights. I slammed on the brakes, pulled the wheel to the left and fishtailed, into the trees, the car skidded and I heard wood cracking as the car left pavement and crashed into the forest - somehow managing not to hit anything except underbrush.
I sat – stunned, silent, embarrassed even though I was alone. I’d lost control – of everything.
I wept until it hurt to breathe. The phone kept ringing. I finally picked up.
“What?”
“Where are you?”
“Nowhere”
“What happened?
“He’s not okay and there’s nothing I can do about it.”
“He’s fine.”
“No, he’s not.”
“He’s going to be fine.”
“How do you know?”
“I just do.”
“No, you just hope.”
“Well….”
“Well, what?”
“Well – whatever he is – or isn’t - it doesn’t matter. We’re not going to love him any less.”
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I was lying in Jeffrey’s bed a couple of months before his third birthday, having just read him his bedtime story. I stared off into space, as he looked through the book again – quietly – both of us sunk inside ourselves. I was thinking about the bath I planned on taking as soon as he was asleep. Who knows what he was thinking – Elmo and Big Bird dreams. We always do this - I read him his story, usually at least twice, (he indicates he wants it read again by turning back to the first page and putting my hand on the words) and then I lay and hold him for a few minutes, more for me than him, and then I say goodnight.
“Okay baby, I’m gonna’ go. You sleep good and I’ll see you in the morning.” I always say that, and then I lean over and give him a kiss on the cheek, which he takes quietly with no response. Then I get up, turn out the light, and close the door behind me saying, “I love you.”
But that night things went differently. I was leaning down saying “You sleep good” reaching for the kiss, then as I pulled away I felt his hands reach up and grab my cheeks. He pulled me towards him – for a second I had no idea what was going on. It happened so quickly I didn’t have time to think. He just pulled me by my cheeks down towards him, kissed me on the lips. Actually he put his lips to mine, pulled away and then smacked his lips and said, “omma” (close enough).
I almost passed out. He still held me by my cheeks and stared into my eyes smiling - giggling a little - waiting for my reaction. He’d never called me momma before, or kissed me back, and then suddenly for some reason he chose that night to do both.
I started laughing. I choked on my tears and laughter all spilling out at once. We laughed together, staring into each other’s eyes. The fog had lifted for a moment, long enough for us to connect and understand through our eye contact and our laughter – everything.