By Jeff Stimpson
My 14-year-old son Alex was born 10 weeks premature, and spent the first year of his life in the hospital. About two months after his birth, he began to show signs of the autism that has since turned profound.
Back then, in 1998, I thought that being in the neonatal ICU (NICU) was like being arrested: Unless some cop beat the hell out of you, being arrested in one place was pretty much the same as being arrested in another place. But they say you learn a lot as a parent, and one of the first things I learned was that my son hadn’t been born into a NICU that was going to win many Nobel Prizes for sensitivity toward new parents.
Among the things said to us:
“I’ve seen kids get this and go over it, and I’ve seen kids get this and not get over it.” (That came from a doctor. The same meaning could’ve been conveyed by just reversing those two parts of the sentence.)
“The aggressive questioning by you and your wife during Alex’s stay in the NICU altered the course of his treatment to his detriment.” (That sure sent me into the future confident about being a parent.)
“I just don’t want to think that you’re ever going to have a normal baby.” (This has since become my favorite, I think, because it turned out to be true.)
I don’t know why people would’ve felt free to say such things to parents. I do think it wasn’t because they thought that parent would be quoting the comments almost a decade and a half later. It’s hard for me to figure out today, as I watch my lanky and bewhiskered boy dance to Elmo on the iPad, exactly what communicating with doctors has come to mean.
I don’t know if it’s Alex’s maturing strength or my own that has made talking to doctors just, well, easier.
First words I look for are the ones nice to hear. “He sure looks like a guy who has no fat in his diet,” the pediatrician says, eying Alex’s torso. Yes, at age 50 I’d love to look as cut as Alex, who lives on yogurt and pretzels and whose dinner is usually three sliced Hebrew Nationals. I ask the pediatrician questions, and I get clear answers–which is nice, but much, much more important is that this doctor’s staff rapidly gets me every form I need to get Alex out of my house for camp and overnight respite.
Alex’s other doctor handles his seizures. This doctor sits behind his desk and quietly asks how Alex has been at bedtime and how many stop-and-stares Alex has had, explains in language a dad like me can grasp what a seizure does to the brain (“like a short-circuit”). The doc also sits with no comment as Alex plays with the bright plastic blocks made for toddlers.
As I near the time of life when I’ll deal with doctors of my own, and wonder what will happen to Alex when news from those doctors is bad, I wonder what I’ve learned. First, I’ve learned to ask to myself the questions that have more to do with my life than with the doctor’s practice:
How long will he be on this medication? How can we live normally with your help? Doctor, no disrespect intended, but do you understand that we never, ever wanted to know you professionally?
Jeff Stimpson lives in New York with his wife and two sons. He is the author of Alex: The Fathering of a Preemie, and Alex the Boy: Episodes From a Family’s Life With Autism (both available on Amazon) and has a blog about his family at jeffslife.tripod.com/alextheboy.