As a toddler, my daughter was always dancing about and singing. She was just a very happy little girl. Then one day, it all changed. She was 18 months old, and just like that, it was like something swooped down and took the spirit right out of her.
I started noticing strange symptoms: She seemed oddly depressed. She would slump over in the swing at the park in complete and utter silence. It was very unnerving. She used to swing and laugh, and we would sing together. Now she just stared at the ground as I pushed her. She was totally unresponsive, in a strange trance. It felt like our whole world was swinging into darkness
Losing the light
Without any warning or explanation, the light went out of her eyes. She stopped talking, smiling, and even playing. She didn’t even respond when I called her name. “Jett, JETT!” I would run over to her from behind and pull her close and hug her tightly. She would just start crying. And then, so would I. We would just sit on the floor holding each other. Crying. I could tell she didn’t know what was going on within herself. That was even more terrifying.
I took her to the pediatrician immediately. He told me that this was all normal. “Children go through things like this,” he said. Then he added very nonchalantly, “Also, she needs her booster shots.” I slowly backed out of the office. I knew that what my daughter was experiencing was not “normal.” Something was wrong. A certain maternal instinct gripped me, and I knew better. I also knew that there was certainly no way I was going to put more vaccines into her tiny body when I didn’t know what was going on.
I found another doctor. This doctor observed Jett for just a few minutes, and immediately knew something was up. “I think she has autism.” I think she has autism…. Those words echoed and exploded in my head over and over. “I think she has autism.” A bomb had just been dropped right over my head. My mind was buzzing. Everything faded around me. I felt like I was disappearing. My heart began to quicken. I was in a daze. I was fading farther and farther away. Jett brought me back, tugging at my dress. She could sense my distress. She wanted to hug me.
“Do you know what your local regional center is?” the doctor asked. “No,” I replied. Or was it someone else who replied? Nothing seemed real. “You contact your regional center and they will observe your daughter. It takes a while to get a diagnosis.” A diagnosis, a diagnosis. His words bounced off of my consciousness into loud, distorted echoes. None of this was really registering. It would take months for this moment to really sink in.
To be honest, I didn’t know anything about autism. I had heard of it, of course. Yet I really knew nothing about it. Was it a disability? But Jett had already been talking and counting, so why was this happening to my beautiful angel? I could feel myself drowning in this unknown sea. The deep waters of autism.
I started doing research the next day, still shell-shocked. I was half researching, half not actually being able to deal with what was happening. I felt like my darling had fallen into a frozen lake, and I had to take a pick axe and constantly cut holes into the ice so she could come up for a breath of air. She was trapped under the ice. And she wanted to get out. She was calling to me in her silence. Her frozen silence said this much. I had to do anything in my power to save her.
I looked up the regional center, like the doctor recommended. We could get help from them. They started tests and observations. To be honest, the whole time they were observing Jett to see if she did indeed have autism, I kept thinking that she really didn’t have it. She was just different, that was all! At that point, I was still struggling to really understand exactly what autism was. It was something negative and scary to me at that time. You didn’t want your child to be autistic. Everything about it was terrifying, and no one seemed to have any answers. I struggled to keep my sadness at bay. Nothing seemed real. The possibility of a diagnosis looming over us changed everything. The feeling of uncertainty and sadness loomed over our daily life.
Our new normal
In September, 2013, when Jett was 3, I received a phone call without any warning. It was the psychologist who had been observing Jett over the last several months. “Hello,” she said in a neutral, robotic voice.
My body froze. I knew who it was immediately. I could hear her voice. I could hear my heartbeat. But I couldn’t make out anything she was saying. It was small talk at first. But I’m sure since she goes through this all the time, she knows that the parent on the other end of the line is waiting. Terrified. So, I’m sure the fact that I wasn’t responding to her small talk came as no shock. My voice was quivering, and I could barely even say hello.
Then she told me: “Jett has autism. And the first thing you…”
“WHY?” I exploded right in the middle of her sentence. “Why?” I broke down into tears.
“I know this is hard,” she said. I was unable to hold back my sadness.
“Why do you think that … that she has it … autism?” I was able to whisper through my tears.
“It’s my opinion. Based on what I have observed…” She started in.
“But why? What did she do? Why do think she does?” I blurted out. I startled both of us with my outburst of anger. Strong emotions swirled around me, faster and faster.
I was taken in by a strong undertow of the deepest sorrow I have ever felt. And I surrendered to it. It was actually quite beautiful, like I imagine death to be. I surrendered. I surrendered to my daughter’s autism. I surrendered to the death of my ideas.
I went into a deep mourning after this. I mourned the daughter I had held in my dreams. The daughter I had hoped for. I mourned the death of an idea. An idea, I guess, of who I thought Jett might be — what I wanted her to be. I didn’t really realize that I had all these dreams or hopes of who my daughter might grow up to be. A ballerina? A singer? A writer? My beautiful little girl who was counting and talking, dancing, and singing was gone. Vanished. Now all I wanted her to be was happy and healthy. I wanted to see her smile again. And damn it, I was going to bring her back.
I battened down the hatches. I put my blinders on. I wrapped my daughter in my wings, and we retreated.