A Father’s Education

The Disney live-action movie Lilo and Stitch was rolling into its opening credits recently as my son Julian, seated next to me in the theater, bounced with exuberance and punctuated the air with small shrieks of delight. He pulled Mr. Cuddles, a sea lion plushie toy and his constant companion, close to his cheek as the glee steadily increased. 

He appeared beyond happy, near nirvana. Watching Disney movies, animated and the live-action interpretations, is one of his favorite things to do, at any hour. As the new Lilo and Stitch moved along, he would excitedly point out differences between the original animated version and the live-action offering.

“Mom-Dad [his collective but singular reference to my wife and me], Lilo didn’t push that girl in the animated movie.”

“There were no feral chickens.”

“Nani didn’t go away to college.”

“Jumba didn’t do that.”

His notations were not born of displeasure, but from his staggering knowledge of Disney animated movies. 

He took in all of this while constantly getting up from his seat, walking out of the theater, rushing back with a wide grin and his eyes fixed on the screen. Along the way he would pause, close his eyes, gesture toward the floor with pointed index fingers, and utter quiet syllables whose meanings are known only to him. 

This is repeated at least a dozen times anytime we attend a Disney movie, and we have seen them all. He relishes every minute of his ritualistic, movie-watching experience.

Julian has autism.

He is 31 years old. He has taught his father so much about life.

‘This Is Who Our Child Is’

My wife, Martina, and I realized very early that something was different. Julian missed crucial developmental markers compared to his peers, and was barely verbal. He was prone to volcanic emotional outbursts and would pace incessantly back and forth while flapping his arms. He was diagnosed at age 3. 

Intellectually, I recognized the reality. Accepting it was a different matter. How could a child of mine be like this? What does it say about me? I planned for my son to become a colossus, a figure of global significance. Autism? No thank you.

I was not, by any measure, a model father during this period. I was a studio anchor for a national television sports network based in Los Angeles. I would fly home to North Carolina for two days each week. I was removed and didn’t really consider the drain on my wife, a college athletics executive, and the challenges that Julian’s autism presented. 

To me, it was simple. He was broken. I had to fix him. I would be demanding and apply tough love. 

I was very wrong.

One afternoon Martina marched into our study, dropped a satchel full of autism-related reading material in my lap, and let me have it. 

“He doesn’t do these things to upset you,” she said. “I know this isn’t what you expected. This is who our child is, it is not about you!” 

The pain and pleading on her face seared through me. I began the journey toward acceptance.

Coming to terms with Julian’s autism meant stripping away most of my conventional notions regarding my son’s pathway in life. I began to understand that, unlike his neurotypical younger brother Jared, our responsibility to Julian would be altricial–he would always need us. He does not drive, is not able to hold traditional employment, cannot take a trip by himself, and requires help with the daily personal regime that many of us take for granted. 

I had to also accept the fact that our life in public would be different. 

His behavior at times seems odd. He has outbursts. He’ll pace and flap his hands anywhere we happen to be, including the mall, church, and family gatherings. 

One afternoon when he was 15, I sat outside a store, waiting for Martina and Jared. Julian paced back and forth, overcome with joy about his new possession: a large empty bag. It was special because the exterior featured all the Disney princesses. He was giggling and holding it up as he paced. 

A woman rounded the corner and saw him. She appeared to be startled by the scenario, as Julian, clearly a teenage boy, was lost in the bliss of his own Disney World. 

As she approached him, she moved to the far side of the walkway, apparently to avoid him, turned her head, and quickened her pace.  

Julian, unlike many people on the autism spectrum, is quite social. He spotted her, quickly extended one hand in the air, and waved.

“Hi! How are you? My name is Julian.”

His smile and demeanor disarmed her, and within a matter of minutes she was laughing as they exchanged stories about Disney movies. Her granddaughter was a huge fan of The Little Mermaid. As she said goodbye, she paused and turned to him.

“Julian, I want you to know it was a pleasure meeting you, and you have made my day.” 

We call it the Julian effect. 

If he has just a few minutes with you, you usually walk away with a smile on your face. There was a time when I would have discouraged him from such an animated display. I learned from him that it is essential to enjoy life’s small moments. Simply being there with him, and seeing the world through his eyes, is a gift.

You Can Get Through Nearly Anything

Courage is an overused word, but Julian has it. I know its form. It is the 35 steps he would take each morning from the door of our vehicle to the front of his high school when he was still a student. As he turned to go in, he always gave me that heartwarming wave and smile.

He would enter a world every day where he did not fit in socially. He was unable to make friends and spent every lunch with his teacher, Mrs. Temple. High school students, for the most part, do not have the desire to engage with someone like Julian. He never attended a school dance or prom and never went on a date. Watching him endure this reminded me that as long as you continue to step forward, as he did, you can get through nearly anything.

Our life with Julian has been full of wonderful highs. Socially, in many ways he is like an 8-year old. He holds onto the magic of Christmas. He counts his annual visit with Santa and Mrs. Claus among his most cherished moments of the year; pulling that off is a story unto itself. His unalloyed holiday joy has taught me not to be bound by convention; it is the spirit of happiness that means the most. 

Still, the lows can be hellish. Julian has had a severe mental breakdown, resulting in hospitalization. He can have meltdowns that lead to violence. Like so many people on the autism spectrum, he can’t tell you why he’s angry. That makes it more difficult. When these moments are over, he is deeply remorseful, but has no sense of why the incident occurred. 

I’ll Take His Hand

Julian has also helped me come to terms with not knowing the answers.

“Dad, what will my life be like?”

“Will I have friends?” 

“Why do I have autism?” 

I’ve accepted, with his tacit understanding, that I do not know how this will all play out. Friends talk about the things their offspring are doing–public relations work in New York, finishing medical school, working in research. I can proudly offer how well Jared is doing professionally, but not Julian.

My amazing wife and I can only take his hand, metaphorically and physically, put one foot in front of the other, and do all within my power to ensure that Julian has a smile on his face every day.

Despite recent public statements our country’s national leaders have made, our family does not view Julian as a burden. He has enhanced the way we see things with his simple joy, his embrace, his laugh.

Julian has taught an extended master class on valuing every second of life. I hope I’ve become a father deserving of the gifts his presence has bestowed upon our family. 

I know this: My life has been immeasurably enriched because I’ve had the privilege of being Julian Ballen’s father.