My son, and his doctors

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.

Dr. Miller has his doctorate in clinical psychology and is an Assistant Professor in the Department of Family Medicine at the University of Colorado Denver School of Medicine where he is the Director of the Office of Integrated Healthcare Research and Policy. His core task is to integrate mental health across all three of the department’s core mission areas: clinical, education, and research. Opinions expressed here are his own and not those of his employer.

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  • http://www.PreemieWorld.com Deb Discenza

    Jeff,

    This is brilliant and in so many ways, again, you have summed up the frustration of so many preemie parents and their daily experiences in the ongoing journey of the preemie experience.

    Well done!

  • Carmen

    Thank you for this real-world insight into your family’s life. Helping Alex cope is tough enough without hitting the wall among professional caregivers. As you make plain, a core ingredient of medical care is compassion and understanding. Without those elements, medical practice becomes nothing more than a service transaction—a woefully inadequate provision for what ails.

  • Chris

    When I read this so many emotions surfaced. I felt sorrow for you and your family for all the could have, should have beens and will never be.
    I also, as a nurse, felt furious that people who should be caring , supportive and nurturing were so cruel.
    I have had the privledge of working with some wonderful Nurses and Doctors ( and now on the other end of medical care ) but I have also,seen how cruel medical people can be. I have never understood,this, why go into a profession that is suppossed to
    help people who are in crisis if you don’t have any compassion.

    I am sorry you have had this experience and I sincerely wish that things will be as good as they can get for all of you.

    It is indeed a whole different ball game when we medical people are on the other side.

    and

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