Where Love Is
Where Love Is
She was so focused on her autistic son that she forgot the One who could help her.
Nicholas had something exciting to tell me the moment he got into the car. “They’re making a new Star Wars movie!” he said. “I saw it online.”
“Maybe we can go see it when it comes out,” I said, putting the car in gear. Nicholas had taken forever to get dressed that morning and missed his bus. The school was 30 minutes away.
“No. I want to be in it,” he said. “I want to go to California and try out.”
I took a breath. “Nicholas, you’re not an actor. You need to be thinking about your math test.”
“You never believe in me,” he said, slamming his fist against the door.
I didn’t say anything. There was no way to explain why he wouldn’t be blasting storm troopers with Han Solo. Arguing would be fruitless. Although Nicholas was 18, developmentally he was considerably younger.
We drove on in silence. I dropped my son at his high school, where he was a senior, and watched him unfold his 6-foot-4-inch frame out onto the sidewalk and go inside. I slumped back in my seat, exhausted before I even got to work. Nicholas exhausted me. My love for him exhausted me.
My husband, Mike, and I had adopted Nicholas after years of infertility treatments. Holding his tiny form that first day, I felt he was a precious gift that God had entrusted to us. We loved him like our own flesh and blood from that instant.
He was a handful, a ball of energy, all right. On his first day at preschool his teacher called. “I asked Nicholas to hang his jacket on the peg. He just stared at me. It was like he couldn’t understand the words I was saying. You should definitely look into it.”
By age five, Nicholas was seeing a psychiatrist and taking medication to calm his explosive mood swings. The doctor noted how Nicholas avoided making eye contact, how he would repeat the same phrases over and over, a sign of autism.
“Autism covers a wide range of developmental disorders. It affects everything from speech to social skills,” the doctor said. “There’s no cure, but therapy and individualized instruction can help. At his age there are still a lot of unknowns.”
I could barely process what I was hearing. This was my baby we were talking about. I’d do anything for him. But I was being told there was little I could do besides adapt to his needs.
Now, outside his school, I thought about calling in sick. No, I couldn’t. I’d missed too much work already, so many days when the stress had felt unbearable.
I was an English professor at Belmont University, a small Christian college. Mike was a math professor at the same school. We shared the responsibilities of caring for Nicholas, but even then it was like we were both working two jobs. I shifted the car into gear. I had to get going.
As Nicholas got older and bigger he developed symptoms of bipolar disorder. Anything might set him off—telling him he couldn’t watch TV or trying to limit the hours he spent on the internet. I couldn’t reason with him. Couldn’t hold him.
I kept thinking a hug would make things better. He’d only push me away. It broke my heart. An IQ test showed that his reasoning and problem-solving skills were well below average.
“We can get tutors, and schools have special programs,” Mike said. “Nicholas could surprise us all. He’s just going to need more help to get there.”
I knew what Mike was talking about. Nicholas had so many good qualities. He could be charming. He laughed easily. He loved music. And dancing. I signed him up for therapeutic horseback-riding lessons, for tennis and basketball.
One year I took him to weeks of rehearsals to dance in a community production of The Nutcracker. On opening night I was helping him put on his stage makeup when he started screaming. He pulled away and ran, deep into the catacombs of the theater. I was mortified.
“Don’t worry,” the director said. “These things happen.” She coaxed Nicholas back to the dressing room. She was being kind, but I knew it wasn’t true. Most kids didn’t act like Nicholas.
Over the years, his psychiatrist had tried 52 different medications, each with its own side effects we had to watch for. The worst were the medications that disrupted his sleep. He’d wake up in the middle of the night screaming.
As I drove to work in the aftermath of the Star Wars war, my old worries exploded to the surface. What did life hold for Nicholas? What if I weren’t there for him? I was a cancer survivor. I was healthy and fit, but I wouldn’t live forever.
Then what? Who would care for Nicholas? The anxiety tormented me. There’d been good news—sort of—when Nicholas turned 14. We hit upon a combination of four medications that helped to decrease the frequency of his outbursts.
He started attending a school for special-needs students. We enrolled him in some clinical trials at Vanderbilt University. I took classes in parenting special-needs kids, did a little yoga and meditation, anything that might alleviate the feeling that at any moment our world could fall apart.
The truth was, other than to go to work or to the grocery store, I rarely left the house. It wasn’t that Nicholas couldn’t be by himself. I didn’t have the energy to do anything more.
I didn’t go out with friends. Didn’t exercise. Sometimes the hardest part of the day was just getting out of bed in the morning.
Even going to church was an issue. When Nicholas was younger, we’d gone to a small, caring congregation where we knew everyone. But all through the sermon Nicholas would make faces, hit and kick us.
I found myself dreading Sunday mornings. We switched to a larger church, where we could be anonymous. But it hardly mattered.