Wednesday, April 11, 2012

Works of Art

In honor of April as Autism Awareness Month, I am taking this opportunity to re-post my essay "The Sculptor." Through posting this personal essay I hope to reach parents of newly-diagnosed children. There is hope. Your vision will change in time. And though it will never be easy, you will grow in ways you could not have imagined before. It does get better--I promise.

The Sculptor

With a mighty strike of the mallet the stone fell away, revealing what I feared lay beneath. The surface of the stone had been irreversibly changed and I shuttered at the realization. Like the creation of stone sculpture, the diagnosis of my daughter’s autism did not happen in the course of a day. Instead it was a slow chipping away of what I believed about my daughter until the disability was finally revealed.

My head was heavy with anxiety and I pulled the car to a stop in a busy parking lot. Cars moved in and out, patrons passed in a blur, but I sat slumped with my forehead pressed against the steering wheel, crying. The autumn sun, high in the midday sky, shone through the windshield and a prickly sweat broke out across my neck and forehead. I felt choked by the collar of my red, cable-knit sweater. In the back seat my fifteen-month-old daughter sat quietly in her car seat, sucking her thumb. She was always quiet. I had thought that was just her way, but now I knew that it was autism’s way.

She had been born perfect, five pounds and twelve ounces, a pink and crying little miracle. We celebrated her arrival into our family, our fourth child and our second daughter. She was loved from the start, her young siblings clamoring to see her and hold her tiny hands. Finding her way right into our hearts, she became a firmly rooted member of our family.

Eye contact was the first thing to go. That was the first part of the stone to chip away. I remembered her smiling. I had pictures of her early on, gazing into the camera lens with a toothless grin and wide, blue eyes. But then it was gone, subtly. She just would not look me in the eye. She would not look anyone in the eye. Instead, turning her eyes far to the side, she looked away. I could get in her face, snap my fingers, shout, she still would not make her eyes meet mine.

I justified and rationalized her behavior. She’s just nervous, I would say, she always looks away when she is scared.  But she did not talk and at fifteen months, she barely crawled. I could only rationalize so much. Then came the seizures. They had actually been a blessing. When her little body began to rock and stiffen, her breathing slow and labored, I was forced to acknowledge that there was something terribly wrong.

The pediatrician referred us to a neurologist, revered in his field, who diagnosed her seizures and handed me a card. “Look into Early Intervention services,” he said. I was looking for a cure, a way to heal my daughter’s seizures and   had assumed the specialist would tell me that after a few months of anti-seizure medication she would be okay. But that is not what happened, and as I took the card from his hand another piece of the stone chipped away. My daughter was changing, being shaped by the skilled and crafty hands of her disability, an affliction we would later be told was autism.

I reluctantly called the number on the card and arranged an appointment with the therapists at Davis County Early Intervention. I was ignorant; I had no idea what Early Intervention was. They sent me a long questionnaire about my daughter’s cognitive and physical development to fill out and bring to the appointment.

Question:  Does your child walk?
Answer: No.
Question:  Does your child talk, or attempt to talk by approximating words?
Answer:  Uh, no.
Question:  Does your child recognize parents or show fear with strangers?
Answer:  Uh oh. No.
Chip. Chip. Another piece of the stone fell away.

When I arrived at the deceptively cheerful office for my appointment with Early Intervention I was eased into a false sense of calm. The office was set up like a preschool with bookcases loaded with books all around the room, musical instruments in one corner and a doll house in another, and miniature tables and chairs arranged in an orderly fashion in the center of the room. Smiling to myself, I was fully prepared to hear their glowing adorations of my beautiful daughter. I felt confident that they would tell me that with a little help she would soon begin reaching all the appropriate milestones.

After reading the questionnaire I had filled out, and doing some discrete assessments of my daughter, a nurse, a speech and language pathologist, an occupational therapist, and a developmental therapist gathered around me. I was seated in a rocking chair while they sat on a blue, circular rug on the floor. The speech and language pathologist read from her report: “Your daughter has moderate to severe developmental delays in all areas.” The words, cold and heavy like rocks, traveled like lightning across the distance between us, landing with thunderous noise and sinking right to my heart.

I swallowed hard and choked out the only question I could ask:  “Will she catch up?”

Words were not necessary; the looks on their collective faces said it all. Yet the nurse chose to offer hope saying, “We see miracles all the time.” She smiled at me, full of pity for the tears that threatened to spill from my eyes.

I was numb on the ride home, trying to push all thoughts of what I had just been through out of my mind, until about a mile from my house. It was then that I felt the full blow of the sculptor’s mallet and the final piece of stone fell away. My daughter as I had known her was gone. In her place was this new creation, what autism had made her. Moderately to severely delayed in all areas. The pain of that realization was too much to bear and I eased my car off the highway, pulling into the bustling parking lot of Smith’s grocery store. As cars passed and patrons walked by with their carts full of nothing, I hung my head low and cried—really cried. I felt the pain coming from somewhere deep within my chest as I coughed and wailed for the loss of the daughter I thought I had. All the while she sat behind me, quietly waiting for me to realize she was not gone, she was still there.

I slowly lifted my head, turning to look at my baby in the back seat. I smiled and waited for her to respond. She did not; autism would not let her. I sighed and wiped my wet face with the sleeve of my sweater. In silence I drove home.

In time I would realize that while my daughter had changed, it was my turn to pick up the sculptor’s chisel and mallet and begin chipping away. I could not heal her, but I could change what autism had done to her. The tools would become mine. And eventually, like the great sculptures of art history, my daughter’s true beauty would be revealed.

Post Script: It's been two years since I wrote this essay and four and a half since the pivotal day described. Keelie has grown and blossomed. Today she is a happy first-grader with a bright smile, infectious laugh, and friends--real friends! 

In this essay I wrote about the Sculptor and the mallet, referring to how these things had changed my daughter. Now, in retrospect, I see that the Sculptor, chisel and the mallet also shaped my family. Keelie's brothers and sister are more kind and tolerant. They have learned patience. I am proud to say the chisel and mallet of disability have shaped them in ways I as a parent could not have done on my own. I, too, have changed. I have been taught lessons in compassion and patience in ways I never would have experienced without Keelie. And for that I am eternally grateful. 

I've heard that the divorce rate for couples with children with autism may be as high as 80%! I'll admit that in those early months I was concerned about my marriage and how my husband and I would come together to raise Keelie. Would our personal heartache be more than our relationship could handle? I am pleased to say that I feel our marriage is stronger than ever. In those first few months, Aaron and I pulled together to focus on the positive and find ways to enjoy our new life with a child with a disability.  Again, I will forever be grateful for the strength of my relationship with my husband.

All of this is not to say that everything is sunshine, lollipops, and rainbows. Let me assure you that we are very aware that, as a family, we face difficult times both presently and ahead of us. However, focusing on the positives of our situation has placed the sculptor's mallet and chisel in our hands and allowed us to shape our reality in ways that allow us to find joy in our journey every day.

1 comment:

Sue said...

This is a wonderful and heartfelt piece and such a generous share with other parents.

Hope is the great gift you give, Fiauna. And not just your readers, but to your daughter.

(And it sounds like she is running with it!)