OCTOBER 31, 2011 12:02PM

"Your son has Asperger's Syndrome"

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“Your son has Asperger’s Syndrome.” The moment the psychiatrist said the word autism, my chin literally dropped. I was shocked. My son was intelligent. I swear he said “Momma” when he was four months old. He counted to 10 when he was a year old. He loved trains and he made up elaborate stories about them. As the psychiatrist explained that autism was a spectrum disorder and that Asperger’s was on the highest end of the spectrum, I still couldn’t comprehend what she was saying.

I thought back over the years: the first time he really saw the moon, and said, “moon ball;” the stuffed animals he had named with first, middle, and last names; the way he could name the model and make of every car that passed us on the road; that he knew his phone number, address, and birthday; heck, he even knew my license plate number, while I couldn’t ever remember it. Autism? MY baby was smart. It couldn’t be true.

But of course, it was. No matter how many more doctors we saw, no matter how much I read, no matter how much I cried, I realized that I although he WAS smart, I had long been denying that he was more reticent, more fearful, more anxious, and much more angry than other children. I finally realized, about a year after the original diagnosis, that I indeed had a son with autism.

How I grieved. I remember going to the end-of-the-year party for his preschool class. All the other mothers were standing around, talking excitedly about plans for the summer, vacation, and kindergarten in the fall. I sat on a chair in the corner by myself. I glared at all of them, and ignored the teachers who came over from time to time to try to talk with me.

I was angry with his teachers who had first suggested that we have him tested by a psychologist. I hated them. I felt like they had stolen my baby. They were the murderers of every single hope, dream, and plan I had had for my boy I felt dead inside without the visions I had had for him. They had taken away my conception of who my child was. I felt emptied.

And just who were they to take away my dreams? They were preschool teachers. I had a master’s degree and taught college, for God’s sake.  So my son got mad easily. So my son wouldn’t follow a few directions here and there. So my son made a sound like a cat and made a “claw” that he slashed in other children’s direction when he got mad. THAT made him autistic? Those behaviors made him abnormal? Really?

It was not until I realized that he was different, and angry, and stubborn to the point of being dangerous—to himself and others—that I had to change my world and his, in order to make him safe. I had to quit focusing on what I had lost, and I had to start thinking about what to DO.

At times, the DOING is crazy. Really, it is not rational. (Turns out that Masters degree just gets in my way most of the time.) For example, yesterday, I took my son and daughter to Subway for dinner. Despite my repeated warnings in the car that they should sit and wait for me quietly at the table while I ordered the sandwiches, they, of course, started arguing, pushed each other, fought over who would get to sit by me, and then spilled their drinks.

I grabbed them both and said we were leaving, without eating.

“What?!” my son screamed.

“Now,” I answered.

James backed away from me. “I’m not leaving without my dinner!” he demanded.

Everyone in the place looked at me. Not again. I was so embarrassed and soooo tired of scenes like this.

“Oh, yes, you are,” I said evenly. I took him by the hand and ushered him out the door. My daughter started to cry too. Once we were in the parking lot, my son pulled away.

“Get in the car!” I said.

“NO!”

“Now!” I said, picking up my daughter.

“I’m not going with you,” he answered. “I’m walking home.”

“Really,” I answered, sarcastically, buckling Emma into her seat. “You do that.”

“I will,” he answered. And he started to walk away.

“It’s at least three miles home, James,” I said. “Get in the car!”

“Whatever!” he said. And he kept walking. Faster. He cut through the lawn of the restaurant.

“Shit,” I muttered, trying to get my daughter’s seat belt on. She was crying harder now.

“Is he going to be OK?” she sobbed. “He can’t go by himself!”

“Stop it!” I yelled. “Just stop crying. I have to think.” I ran around to my side, put the keys in the ignition, and slammed the car into reverse. I was trying to keep my eyes on him, but he was now in a used car lot, and it was hard to see him.I pulled out and drove quickly around the corner. I didn’t see him. My heart clutched with fear. I grabbed for my cell phone. I was going to have to call the police. My hands were shaking as I tried to dial 911.

“Red, red,” I thought quickly, his favorite color. He would be looking at a red car. And sure enough, there he was, standing by a red Dodge Charger.I drove over beside it, not completing the call.

“Get in, James!” I said. “Look, we’ll go back and get the sandwiches. Please just get in!”

“Get in, James!” Emma yelled.

“No!” he answered. And he kept walking.It was almost dusk. The sky was blurring with soft oranges, reds, and purples, ironically beautiful to the ugly anger and fear I felt inside me. There were hardly any other cars on the road, since it was Sunday night. I kept following him with one hand on the wheel and the other hand on my cell phone. I was sure that he would get tired soon and get in the car. But when?

Now he was on the sidewalk, starting to enter a neighborhood. It wasn’t a great neighborhood though, and I really didn’t want him walking through it. Broken-down cars sat by the curb here and there, and almost every house looked like it could use a coat of paint. And a gardener. 

James turned around again, and motioned for me to go away, yelling for me to leave him alone. I just shook my head and kept following him. A couple of men sat drinking beer on the porch nearby. They stared at me hard, and I could tell they were wondering if I was a child molester, trying to figure out why I was slowly following a little boy.

“I’m his mother!” I called out the window to them. “He got mad, and he is walking home.”

The men laughed, raised their beers to me, and one called out, “Been there, Momma. You keep doing that Tough Love. It’ll work eventually!”

“When he’s 18!” the other yelled.

I smiled back through tears and waved at them. I looked back at my daughter. Her eyelids were heavy. She was starting to fall asleep. Thank God.

James turned the corner then, and pointed to a sign. It was a one-way street. “Ha! You can’t go this way! Now quit following me!” He was laughing at me.

The little shit. Again it struck me just how intelligent my little boy was. I hesitated for a moment, and then turned, laws be damned. If a policeman tried to cite me for this one, I would just explain that James had special needs, and I was trying to make sure he was safe. Motherhood trumps legality in my book. I turned on my emergency blinkers and continued.

James turned around, shocked. “You can’t do that!” he yelled. He pointed again at the one-way arrow.

“Whatever,” I yelled out the window, echoing his tone when the scene first began.His eyes held mine for a second (was there a little look of respect there? maybe even a look of relief? was he going to relent?) and then he turned back around and continued walking, kicking at stones in the gutter.

I sighed. Of course it wouldn’t be that easy. I continued to trawl along behind him. Emma was fast asleep now. I glanced down at the odometer, and noted that we had come almost three-quarters of a mile. He had to be getting tired soon.

I started to pray. “What am I doing wrong, Lord?” Tears sprang to my eyes again, but I was interrupted by a car coming right at me. I pulled over as far as I could. The driver slowed and put down his window.

“You’re going the wrong way, lady!” he said, pointing at the sign.

“That’s my son,” I answered.The old man looked at him. James was walking defiantly, muttering, and gesturing wildly.

“That’ll give ya gray hair,” the man laughed. “Hang in there, dear.”

“Thanks,” I answered. “Please don’t call the police on me.”

“Wouldn’t dream of it,” he answered and drove off.

Perhaps all parents go through similar things, I thought. Perhaps this was just a normal act of rebellion. Perhaps all parents felt exasperated, and out of control, and crazed when it came to their children.

I thought differently two-and-a-half miles later. James was walking more slowly now, even starting to limp, and he had long since stopped muttering. My tears had dried, and I had quit praying. I just felt tired. And hungry.

I tried to imagine what I would say to him when we got home. Would I yell? Would I spank him? What could I say that would make any difference, that would make him realize how scared I had been for him, how he had scared his little sister, how I had broken laws for him . . . .

I didn’t say any of it. An hour and a half after leaving the restaurant, we pulled in the driveway. He sat down heavily on the front step and took off his shoes.

I got Emma out of the car she stirred slightly, and we stood before him.

“I did it!” he said. “I did it! I walked three miles!” He was triumphant, thrilled with himself. “Did you clock it the whole way? How long did it take me? Can you believe I did it?”

“Can I believe it,” I sighed. That first psychiatrist, the diagnoses written in black ink, the preschool teachers, the other mothers’ stares, the temper tantrums, and medication bottles, images of our past and future danced haphazardly in my mind, leering and jeering at me. I felt like he was asking me if I truly accepted all that had been and would be.

“Yes, I can believe it,” I said finally. “Let’s get you into a bath.”

“You walked all the way home?” Emma asked him, rubbing the sleep from her eyes.

“Yep!” James answered proudly.

Emma stared at him. “I hope you feel better sometimes,” she said simply.

It was the "s" on sometimes that did me in. ‘I hope you feel better sometimes.’ Not always. Just sometimes. In her words, there was acceptance of all his times—of who he was, who he had always been, and who he would continue to be. She knew him and loved him and wished he would feel better sometimes.

“Thanks,” he answered her. Then as he limped off to get a bath, he looked back and said, “Mom, I’m hungry.” 

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Comments

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This is incredible. Absolutely incredible. You should write a book about your experience, and the Aspergers aspect is the least of it--your writing talent is what counts!
Kristina, you are an amazing writer and an amazing mother. I hung on every word, and when I got to the end, and read Emma's simple, wise and loving statement, well, I'm still just sitting with it. ~r
This was very well written from your shock and dismay with the diagnosis to the walk/ride home from Subway. Maybe he walked home on the one way street challenging you but he made it.
Very well written account of a scene I could so well relate to. I have two children (now 28 and 30). The eldest has PDD-NOS, ADHD, Sensory Integration Dysfunction, developmental delays, and a profound hearing loss. My youngest son is gifted. I … we…lived through many similar times of frustration and defiance…and also times of sweetness and hope. I am glad to tell you that we are all okay now and that my "boys" are loving and kind to each other and that we made it through their childhood in one piece, though at times it was close! In October we were in NYC for my son's inclusion in the Art of Autism art show in SoHo. His brother was very proud of him and it was amazing to see the performance artists with autism and Asperger's and my son's gaze as he saw people he could relate to.

All the best to you and yours. I know it is a tough road. May there be many days of sunshine, love, and creativity.
What a wonderfully told story. Very human. Suspenseful. And to think the eruptive walk home was somehow turned into a victory...something so big about that concept. Something we should all practice. Focus on the victory within.
Kristina: This is a harrowing story, extremely well told. Cinematic; as beth says, suspenseful. And so recognizably human -- you don't pull your emotional punches, don't sugar-coat your feelings. Which makes it a brave posting on top of everything else. Tecnically, very few people can pull off such believable dialog. A real tour de force. I wish it had gotten more attention.