The book tour has prompted some poignant responses, including this one from a reader who contacted me via a Twitter direct message. She had just watched me on TV:
You were talking about the time you were too busy working and that you missed out on family time. My 14-year-old son fell off a cliff at YMCA camp in 1987. It never goes away.
I live a different life now—most days are normal. But, sometimes thoughts pop in and it’s as though not one day has passed. The morning of your interview, I was thinking of the ways I could have been a better mother. I was regretting yelling at him the night before he left for camp because he didn’t do something I told him. We had raised money for him to go to camp, and here I was 28 years later, angry with myself because I had told friends (sort of kiddingly) that I needed a break from him and please donate so I could have a week to myself. I think I used the word, “help me get rid of him.” I cried that morning and basically beat myself up.
Then I heard you saying similarly themed comments about regrets. I know we know things, but sometimes just need to hear someone else say it. I realized that it’s just because my son is gone, and I can’t take a trip or make it better, but I’m no different than you or any other parents.
I was a good mom.
She ended the note with a reference to the post comparing autistic children to dandelions: “I am going to try to plant a dandelion in the kitchen.”
I had no idea how to respond. With shaking hands, I typed into my IPhone:
Wow. You just gave me a chill. You got me crying. Please don’t beat yourself up. Great moms need a break from their dang kids—and great moms sometimes outlive their kids. He’s still with you. Hang on to that—and not the guilt. Warmest, Ron.
I wish I could have done better. I wish I had the words for her. Because she didn’t say her son was autistic, I wasn’t sure at first whether her note belonged in this thread. But it does. We all struggle with the questions haunting that mom: Am I a good parent?
Another reader, in an email, discusses his guilt and anxiety, describing himself as a father of an autistic five-year-old boy long misdiagnosed by medical professionals:
Learning that Elliot is on the spectrum was a heart-rending relief. All your concerns and suspicions that were waved off by others turning into a terrible validation that you’re not just neurotic or impatient and you really do know your own child well enough to tell that something is wrong. We are fortunate to have an excellent program in our district that he has blossomed in. After six months in his specialized class, he has been spending half days in a traditional preschool setting and half with his therapists. This fall he will be going to kindergarten and has been placed in full day program much like now only with more emphasis on transitioning him. We’re hopeful.
His boy sounds a lot like mine. Tyler, now 18, has a brilliantly unique sense of humor that helps him cope, and even connect.
For a while, as a joke, we’d show him his name and ask what it said. He would happily answer “Elliot!” I’d smile and mischievously say, “Or maaaaybe... E-Lye-Oat”—intentionally mispronouncing it. He’d laugh and say “Elliot!” I’d respond with “Or maaaaybe...” and we’d go in a few circles.
One day I was getting him a yogurt and said “Or maybe Elliot should get broccoli!”
Elliot smiled and said, “Elliot gets yogurt, E-Lye-Oat can get broccoli!” He laughed, grabbed his treat and ran off.
I was stunned that my son had turned the mispronunciation of his name into a joke about shoving broccoli off onto an alter ego I had created. Those are the times that make you happy, proud and hopeful. I know that being smart will offer obvious advantages in life, but I think it’s his personality that will help him get the chance to show what else he has to offer.
Like Tyler’s family, the people who love Elliot the most had a hard time understanding him—or how to help him—until the diagnosis.
The rest of my family has been supportive although my mother frets constantly about Elliot still being in pull-ups. He has trouble understanding his body and when he needs to use the bathroom. We’re working on it and his therapists are working on it. And talking to the assistant principle at his school next year, she seemed optimistic, based on previous students, that Elliot will pick it up.
It’s an obvious source of worry that he will be teased for it, but it’s disheartening to visit the family with a list of accomplishments Elliot had made and have it boil down to “But is he potty trained yet?” as though the time he wrote out the alphabet in shaky letters alone in his room and called me in to see or how we’ve been able to retire all the various sippy cups because he’s increasingly capable and confident with his small cups means little if he’s not in underwear. I’ve explained this to her and she’s properly chastened each time ... until the next time we talk.
The father attached a picture that Elliot drew. The boy likes robots and, one morning, his dad drew one for him. Elliot picked up a marker and copied it—the first actual representative thing the father had seen him draw. The paper is crumpled because Elliot carries it with him, telling anyone who’d listen, “This is a picture about robots. A daddy robot and an Elliot robot.”
Love that boy, I thought.
“Can’t help but love him,” the father wrote.