Sometimes I feel bad about having a child with autism. And then something crazy happens. This week it was something tragic. A little boy who was born the day before my son in the same hospital 10 years ago died in a tragic accident while on a joyful visit to the Baseball Hall of Fame in Cooperstown. And now, I can’t sleep.
I don’t think my son could enjoy the Baseball Hall of Fame. He doesn’t really like baseball. I think he thinks he’s supposed to like it. He even tried a Challenger League (Little League for kids with special needs) last year. When he said he wanted to try it, I literally ran to a sporting goods store to buy him a lefty mitt. They asked if I wanted to donate $2 to help children with autism. I said, “this whole purchase is to help a child with autism!” He wore the mitt twice. He stood in the field and waved his bat at the ball. He ran to first. He ate 2 hot dogs.
It’s always 2 hot dogs. He prefers CitiField to Yankee stadium. It’s not the Mets or the better sight lines. It’s Shake Shack. CitiField has it. Yankee Stadium does not. 2 hot dogs. Always 2 hot dogs. Shake Shack because he’s a hot dog snob.
But he’s mine. If he wants to repeat 10 jokes or skits from Sesame Street with Ernie and Bert or Neil Patrick Harris as the Fairy Shoe Person or Lin Manuel Miranda as Freddy Flapman or a bit with the Good Cop and the Bad Cop from the LEGO Movie or from some other video on YouTube that I can’t stand but he loves. I’ll do it. I’ll let him do the sequence of jokes and skits 10 times in a row. Sometimes 20. When I’m supposed to do it alone or it’s a team act, like Abbott and Costello, I’ll let him correct me until I get the accent just the way he wants it and say it with the inflection he prefers. I’ll do it over and over because when I get it right he smiles and giggles and laughs.
He’s falling behind his grade level because it’s hard to get him to pay attention to his lessons. His academic progress seems to be slower and slower while the therapists and teachers focus on keeping him focused. I would work on his homework with him but he won’t let me. I’d teach him multiplication and math tricks I’ve learned but it’s pointless. His memory lets him memorize arithmetic in a way that often surpasses my skills. And he’s starting to get fractions now — at least that’s what I see in his reports from school. He doesn’t do that with me. Mostly, he leaves school in school and only acquiesces to homework with his therapists but not with me. Maybe someday.
He likes when I take him to run short distances at New York Road Runner events and he runs 400 yards with a smile burned onto his face. He loves the cheering and the medal around his neck. And then he wants the 2 hot dogs at Shake Shack. And he wants to pick the Shake Shack. Even if it’s one that’s 45 minutes away without traffic. And I’ll take him because I just want to see him smile.
I give him almost whatever he wants whenever he wants. I’m pretty sure it makes me a bad dad but he has the short end of the stick and I’m not sure the stick is ever going to get any longer. I’ll usually give him whatever I can to make him happy.
Except when he makes me crazy.
I’ll try again tomorrow to not yell when he makes me crazy. When he asks one too many times for me to do it again. When he says something mean to me or his Mom or his brother for no reason other than that he likes the way it sounds to say idiot or moron or jerk. He doesn’t mean it and I think he knows it’s wrong but it’s just one more thing that he can’t seem to control. And getting upset is stupid (another favorite word of his) because then he knows he got me and that’s really his goal so when I get upset I’ve lost twice.
But he’s here and he’s mine and I don’t ever want to lose him.
My son has autism. Being a father isn’t what I thought it would be but maybe it’s the same father I would have always been. I’ll never know. Can’t really compare it to being a father to my son without autism because he’s still the son to a father who is the father of a boy with autism. It will always be an uncontrolled experiment.
I love being his father. Being father to both of them. Separately and together.
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I’m very lucky. Really, I am. Sometimes I just need a reminder of just how lucky.
Evan Stein is Director of Neuroradiology at Maimonides Medical Center.
