All About Sylvia–An Autistic Child’s Drawing Journey

Chapter One

A life more significant…

“It is not in the stars to hold our destiny but in ourselves.”

—William Shakespeare

Before Sylvia was born, I had an easy, perfect life. I had just published my new book, my oldest daughter had just gone to college, and my two-year-old daughter, Alina, was growing into a beautiful, brilliant girl.

Then Sylvia came into my life.
I was happier than anybody else.
It was one of those hot California summer days. Early that morning, I was brought to the hospital maternity ward plagued by nauseating cramps that grew increasingly frequent and severe as time passed. I didn’t want the nurse to give me any shots to kill the pain. I believed that if I could give my child a natural birth, I could tolerate any physical hurting.

I lay on the bed thinking and picturing what Sylvia would look like. She’d been with me for nine months. Now it was time for us to face each other. I was going to see her any minute; this thrilled me. I simply couldn’t wait any longer, even though this was not my first time to have a baby. I guess all parents are just like me, picturing the moment of infinite happiness when we see a new born baby—a new life, a new beginning and a new member entering the family.

Life couldn’t be better in that moment.
When the nurse laid Sylvia in my arms, I was amazed by how tiny she was: 6lbs.11oz.With only one eye open, I noticed their clear, indescribable, light green color. She seemed to see me looking at her intently. Perhaps she was timid, looking at me for the first time, but she quickly closed her one eye and locked herself in darkness.

I cuddled newborn Sylvia in my arms as close as I could, mesmerized by her. A little girl, perfect in every way, she wasn’t like me. She had soft light brown hair with the longest, dark eyelashes I had ever seen. Her slim fingers, even though she curled her tiny hands, were created for playing piano. Maybe she could be a musician when she grew up?

I started picturing her future, thinking about a deeper meaning to our lives. But a twinge worry came to me all of a sudden; a growing sense that something was wrong. A dreadful feeling began to rise and spread throughout my body. Sylvia didn’t cry immediately after she was born like my other two daughters. They had cried loudly, as if proud to make their announcements, “We are here!”But Sylvia was different. She came into this world silently—paused for a few minutes, didn’t make a sound—until the nurse patted her tiny butt. Then she finally cried, but sounded very unhappy, and it only lasted short while.

Why didn’t she cry by herself? Perhaps there were connections in her brain that did not develop properly? A wave of fear pulled me into the reality as I couldn’t visualize the problem. “Is there something wrong with her?” My unsteady voice shocked me.

The nurse said a lot of newborn babies didn’t cry right away. Sylvia was one of them. Her words calmed me down a bit, but I still had my doubts. Was there anything that pulled her into her own world? Tons of questions were dancing in my head.

Sylvia was quiet. I didn’t like the silence between us; it disturbed me somehow. It’s difficult to describe how I felt; even harder to expect others to understand the worry on my face. I was weighed down; my joy had been stolen from me. I couldn’t imagine life with a child that could not function normally.

Anxiety rose and filled my throat choking me. I had never felt so terrified. I would rather there be something wrong with me than even thinking that there might be something wrong with my child.

Fear consumed me.

“Every child is different.” The nurse said to me when she saw my troubled face. “She’s perfect, isn’t she?” She added more words as she stepped out the door.

“Yes, you are right, she is perfect.” I said, crying and smiling at the same time. Of course I would tell Sylvia she was going to grow up and turn into a beauty. She would grow and glow. She would amaze herself. She would embrace the whole world. And I would love this amazing, beautiful gift so much.

My husband sat next to me and held my hand, his eyes fixed on Sylvia the whole time, oblivious to my expressions. My oldest daughter, Jenny, has always been a happy girl, never jealous or envious of my attention; content with Alina and now Sylvia. She stood there wearing the biggest smile, eyes filled with affection, as she gazed at Sylvia. Alina was the only one who tried to draw everybody’s attention away from Sylvia. Two-years-old by then, she sat up and lay down, then grabbed my hand and nestled in my arm, but all my attentions were on Sylvia. Alina felt ignored and finally said, “Oh, man!”

We all burst into laughter and looked at Alina who buried her head under my arm. I quickly brought her closer to my chest and turned her face up. As I looked down on her perplexed expression, I immediately realized how sensitive she was. I didn’t even think about how she would react to her new baby sister. She was both happy and somewhat lost during the pregnancy. I could tell she couldn’t wait to see Sylvia, but at the same time she was afraid of sharing me; the jealousy perpetually in her eyes. I wanted to share my affections equally, but Sylvia absorbed all my strength and attention from the moment she was born.

Observing Sylvia, her eyes were closed, not wondering this new world around her, not connecting with her family members. Anxiety consumed me.

“She’s fine,” my husband said confidently, yet his voice was weak. I should have listened to him, trusted his judgment, but his faded voice hung in the air making me nervous. I could barely breathe.

Our marriage slipped away when Alina was a year old. A sad truth. Determined to work it out for her sake, I tried to have a more intimate, loving relationship, and in doing so, I became pregnant with Sylvia. I was in turmoil. One more child in a life filled with so much uncertainty. He was reassuring and convinced me to keep the baby, telling me that Alina needed a sibling to play with and I agreed. In China, couples can only have one child due to the ‘population quota’ law. My oldest daughter was born within those boundaries, but always felt so lonely without a sibling. So now, Alina had a sibling to play with.

Regardless of what her arrival would bring, Sylvia entered our world.

Let smiles stay in life, even though love will hurt. Crying is never an option—most of the time. We all experience joy and grief and everything in between; it’s part of being human.

I tried to stay positive while struggling against all my concerns; tried not to be drawn into Sylvia’s bizarre behaviors, all-consuming angsts, silences and isolating tendencies. More and more my fears and worries frustrated me; disturbing and frightening thoughts only grew day after day as she turned twenty months.

She experienced many forms of anxiety, awkwardness and behavioral challenges. Very uncooperative, she did not look at me when I called her name. I feared she was a deaf. Her development continued to lag behind the normal standards. I was in a constant state of apprehension mixed with profound loss.

For a while, I had excused her sluggish progress as individual variation. But there were too many things to deny: she was not talking—losing her ability for language—had zero vocabulary skills. She’d grab my hand to signal what she wanted, but couldn’t use words to tell me her needs. She was very sensitive to light and noises. She grew alarmed if I rearranged her toys or something she liked. I couldn’t avoid the obvious and had to admit that something was not right.

“Mommy” is the first word for most children mumble, but that word never passed Sylvia’s lips. Neither did any other. I hoped she was just a slow learner.

“It’s going to be okay,” I constantly whispered to myself and Sylvia. I prayed and hoped.

I hope
When the darkness falls, I will hold your hand
So you won’t feel so lonely.
When no one understands you,
I am here to be near you.
People have wondered “What am I going to do?”
When I look at you, I know we can make it through
When you outline a colorful world
That’s where I know
I love you so
I am grateful for my life and for having you
I wish I could give you more
Do whatever it takes to let you create a breakthrough
Yes, a life can be more significant. If Sylvia needed me to be “her way”, then I would be “her way” and I would be supportive. Whenever she needed me, I’d stand by her, to be there and not let her fall.

But I was still hoping for a miracle; for Sylvia to suddenly talk and behave like other kids, running around and developing normally. I wanted no shadows to cloud her bright and colorful world. There had to be a better way for her to interact with people; that she would catch up eventually; that my worries would go away forever.

But then came the day my life shattered into a million pie