She was so focused on her autistic son that she forgot the One who could help her.
by Robbie Pinter — Posted on Dec 15, 2014
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.
I prayed constantly, for strength, for help, desperate pleas in between crises. Sometimes prayer itself seemed like just one more thing I had to do. I was totally driven by the conviction that I had to be there for Nicholas. Always.
I pulled into the parking lot at the university and trudged to my office. Switched on the computer and opened Outlook. There was an e-mail from Vanderbilt. A professor was conducting a study looking at how practicing mindfulness might affect parents of autistic children.
Mindfulness? I remembered once talking to a therapist about that. Meditation. Breathing exercises. Living in the moment. I’d tried it. But it was impossible to stick with, amid everything else I had to do.
I stared at the e-mail, and the link to an application form. I had to do something. It’d been 14 years since that day in preschool. Was this how it would always be? Struggling just to get through another day?
This was a formal study. Six weeks of training. A two-hour session every Wednesday. I was desperate. I clicked on the link and filled out the form. That night I told Mike about it. “That sounds interesting,” he said. “I’d like to do that, too.”
What about Nicholas? I almost screamed. Mike read my mind.
“We’ll find someone he can stay with,” Mike said. “He won’t be alone. We need to do this. Both of us, or we’ll be no good for Nicholas.”
That first session there were four couples in our group. We sat in a circle, Mike beside me. We introduced ourselves, and just hearing what the other families were going through suddenly brought an overwhelming sense of relief. We weren’t alone! I’d never gone to a support group. I never felt like I could get away.
“Mindfulness isn’t about changing the challenges you face,” the instructor said. She too was the mother of a special-needs child. “They’ll still be there after this training is done.
"It’s about being intentional in focusing on what you’re feeling, what you’re dealing with at any given moment. Staying in the present. Reminding yourself that you have no way of knowing what the future holds.
"Almost everything we worry about are things outside of our control. We have to learn to let go. But it won’t happen overnight. It’s a skill, a mind-set. One that by participating in this study you’re committing to....”
All around me I saw heads nodding. How is Nicholas? I wondered. Already I’d broken the rules by worrying about him! We’d left him with my mother, at her retirement home. Then we’d turned our cell phones off.
We learned about breathing, how to focus on something as small as a single breath. The importance of exercise. And guided meditation, six times a week. A way of praying. Learning to embrace the stillness.
It was a lot to take in. Walking to the car afterward, I tried to relax, to concentrate on the warmth of Mike’s hand in mine. But my palm felt sweaty. We had to get Nicholas. Why wasn’t Mike hurrying?
Nicholas and my mom were watching TV. “We had a good time,” she said. “Boy, he sure knows a lot about Star Wars, doesn’t he?”
The next day there were the usual arguments, the usual race to meet the school bus. Breathing exercises? Who had time for that? But that night, after I’d put Nicholas to bed, Mike and I sat on the floor of the study and together went over the reading we’d been assigned, a lesson on how our worst fears are often unfounded.
I closed my eyes, took a deep breath and slowly, purposefully let the air escape my lips. The room was quiet, absolutely still. I could hear Mike breathing across from me. But there was something else. A feeling of peace, deep inside of me. An unmistakable presence. God. There with me.
I’d never really stopped to make room for him. Until now. And then, just as the thought crystallized in my mind, he was gone, like a whisper in the wind. I kept at it, every day. making the time. Intentional breathing. Praying with Mike every morning. Taking a walk at lunch.
When Nicholas would get angry, when he would fixate on some impossible goal, when he repeated the same phrase over and over, I told myself, This has happened before. It’s nowhere near as bad as before, and it will pass. It’s okay. I don’t need to fix this.
At the same time I tried to concentrate on that particular moment. A focus so intent that there was no room to think about the future. I didn’t know what would happen. There was nothing I could do but trust.
More and more I could feel a presence, a comfort I could depend on, the only thing I could really depend on. I was no longer trying to do this alone. I was making room for God.
When the training was over, we filled out a survey, as we had at the beginning of the study. The results were dramatic. Nearly everyone in the group felt calmer, more at peace. Mike and I were no different.
No, it wasn’t a magic wand. It was a step in a journey that has moments of wonder and love, love that can exhaust you with its limitations. It is then that I let a greater love care for me.
It has been two years now since Mike and I participated in the Vanderbilt mindfulness study and still, every day, I remind myself of what I need to do to take care of myself. Like anything it’s easy to slip back into old habits, to let fear creep in.
Nicholas is 21 now and working as an intern at the same preschool he attended. He is part of a program at Vanderbilt that gives students with intellectual disabilities the opportunity to attend college while practicing the skills they need to find meaningful employment.
Think College, a national organization, coordinates these programs at hundreds of postsecondary-education institutions.
I’m so proud of Nicholas and the hard work he’s done. I still worry about his future. But mostly I focus on the here and now. Where I am. Where Nicholas is. Where Love is.
Learn the basics about mindfulness!
Download your FREE ebook, A Prayer for Every Need, by Dr. Norman Vincent Peale.