Buzz Bissinger on Raising a Special Needs Child

My son Zach was born with brain damage that occurred during his birth. His brother Gerry—older by three minutes—is fine. Zach is now 24, but his comprehension skills are roughly that of an 8- or 9-year-old. He can read, but he doesn't understand many of the sentences. He can't add a hundred plus a hundred, although he does know the result is "a lot." I took him to see the movie Spartacus when he was 9, and after a blood-flowing scene at a Roman villa where Kirk Douglas singlehandedly killed two million buffed-up soldiers with a plastic knife, he turned to me and said, "Look, Dad! A pool!" He has always loved pools.

As he grew out of childhood, I never knew how much Zach would understand. While his vocabulary expanded rapidly, his knowledge of what words meant did not keep pace. When I tried to explain something abstract, I could sense him sifting through his hard drive with its millions of data points. But the hard drive did not help him with concepts like preventative health or racism. He knew who the president was but not Osama Bin Laden. He knew something terrible had happened on 9/11, but when the anniversary came, he called to wish me a "happy 9/11!"

Instead, our relationship had been largely predicated on games. He loved goofy hypotheticals: what would happen if he did something I told him he could not do. When I kissed him good night, he invariably asked me if there was a certain word or name he could not say after I turned out the lights.

"What can't I say?"

"You can't say Rick Lyman."

"What happens if I say Rick Lyman?"

"I will have to come back upstairs."

Dressed in his usual T-shirt and gym shorts, anticipating the tickling war we referred to as "cuddies," he began to giggle. I walked down the stairs and waited at the second floor landing. He was plotting strategy.

"RICK!" he screamed. (I said nothing.)

"RICK LY!!!!" (I said nothing.)

"RICK LYMAN!!!!!!!!!!!"

I ran back upstairs and banged open the door. It was on. I threw pillows at him. He threw pillows at me. I got ahold of him and tickled. He kicked me in the head. I chased him around the room, became exhausted and had to stop. He seemed exhausted as well. I rolled the top sheet over him, kissed him good night and went back downstairs. From above I could hear a pulsating drum getting louder and louder.

"Rick Lyman ... RICK LYMAN! ... RICK LYMAN!!!"

He could have gone on forever. At any time. At any age. But when he turned 21, after nearly 15 straight years of doing it, I decided it had to stop. I was ambivalent about giving it up, but I could not stand it anymore. It only reaffirmed our frozenness. Could we not move on to something else?

"Zach, you're 21 now. Not 6. This is what 6-year-olds do. I can't do it anymore."

"Sorry, Dad."

"There is nothing to be sorry about. You're just too old. You're 21. What happens when you are 21?"

"You're not supposed to do things like that anymore."

"That's right. Do you understand why?"

"I'm 21, I'm kinda too old for this now."

I closed the door to his room. I stood right outside. I burst back through the door. "Just don't say 'good night.'"

It was on again. I knew it was the one thing he loved about being with me. I was scared of losing it.

It is strange to love someone so much who is still so fundamentally mysterious. "Strange" is a lousy word. It is the most terrible pain of my life. As much as I try to engage Zach, I also run from this challenge. I run out of guilt. I run because he was robbed and I feel I was robbed. I run because of my shame.

But whatever happens with Zach, I know I cannot think in terms of my best interests, even if I think they are also in his best interests. Zach will be where and who he will be. Because he needs to be. Because he wants to be. Because as famed physician Oliver Sacks said, all children, whatever the impairment, are propelled by the need to make themselves whole. They may not get there, and they may need massive guidance, but they must forever try.

Excerpted from Father's Day: A Journey Into the Mind and Heart of My Extraordinary Son by Buzz Bissinger. Copyright © 2012 by Buzz Bissinger. Used by permission of Houghton Mifflin Harcourt Publishing Company. All rights reserved.