After three girls, we were excited to be having a boy. Our house was so happy and chaotic then, that it wasn’t until Jason turned 3 that we suspected anything was wrong. So what if he wasn’t talking yet? Maybe he was just being polite.
Autism. My husband, Denny, and I cried the night we got the diagnosis. After looking it up in the encyclopedia (this was pre-Internet), we worked into the morning condensing three years of home movies into a 13-minute clip for the doctor, who wanted a history. What had been under our noses suddenly was clear. The obsessive-compulsive behavior, the tics, the regression, the mystery unwrapped like the presents Jason wouldn’t on Christmas morning.
We saw countless doctors. Our bookshelves filled with three-ring binders as we tried therapy after therapy (toilet training took years). Then, when Jason turned 14, the seizures started. Two years later we had to pull him from school when he started becoming aggressive.
To make a long story short, as they say, we didn’t cure Jason. He’s now 26 but cognitively remains an 18-month-old, and forever will. He doesn’t speak but has sounds for certain things that we understand. Quite simply, he’s still our baby, but in the body of a man. In fact, he’s quite handsome. At stop signs I’ll catch young women in other cars flirting with him, which always gives me a sad smile.
Friends have hinted there are facilities, but Jason will always live with us. If he were ever mistreated by anyone, he couldn’t communicate it.
On certain days Jason might sleep for only an hour. So that Denny can rest for work, I’ll lock Jason and myself in the master suite so he can’t roam the house, leave the refrigerator door open, or escape. I’ve learned how to catnap with lots of noise and the lights on. Disney movies will play on loop in the DVR, and there are moments when I’m squirting lotion into Jason’s hands every five minutes—his favorite obsessive-compulsive behavior.
Divorce rates are high for parents of autistic children. Many of the couples we met in various programs are now separated. Denny and I got used to doing most things apart. Like if one of us wants to go to lunch or church, the other must stay behind to care for Jason.
One exception has been golf. Most of my life I thought the game seemed too dramatic, what with the stiff TV commentators and their exclusive whispers, but at 50 I tried learning, because to be outside with Denny on a “golf date” was special. But like everything else, arranging care could get problematic.
One day, when our caregiver canceled, I told Denny to go ahead and play alone. His eyes got big as he said with uncertainty, “Well, why can’t Jason just come with us?”
Even though Jason is non-verbal, he can be quite loud. The idea of taking him to a golf course was sobering. But Denny explained our situation to Dave Wilber, the general manager at Heritage Hills Golf Course here in Claremore, Okla., who agreed to let us try.
To our delight, Jason loved riding in the cart. We should’ve guessed, as he has always found wind and movement soothing. As a baby, we used to sit his car seat on top of the dryer. To this day, when it’s windy, he’ll stand on the back porch, close his eyes and just smile. The cart has the same effect. Of course, some rounds he prefers to skip along. Over the years he’s learned to be still during shots and that “his job” is to tend the flag. In the clubhouse he shakes hands with other golfers like a perfect gentleman.
Our lives are not what we planned when we got married. Nevertheless, we love Jason very much. Each member of our family is more patient and tolerant because of him. Because we don’t sweat small stuff, he has made our lives better.
To get to do something together outside—words cannot express how happy that makes us. Even though Jason can’t say the word golf, he knows what it means and will run to get his hat, sunglasses and shoes. For a few hours, we feel normal.
—With Max Adler