Almost five years ago, I had a beautiful baby boy.
Shortly after he was born, I was told I should talk to a geneticist to understand more about his Down syndrome, which was a whole new world to us. So I did. And the geneticist looked at this beautiful boy…
…and proceeded to tell me everything he would never do, and then tell me that he “knew it was hard not to have a perfect baby.” I looked at him and said sharply, “Don’t ever tell a mother her baby isn’t perfect. He’s perfect in his own unique way.”
The geneticist laughed and admitted that was a good way to look at it. Yes it is—because it’s true.
I left that appointment with tears in my eyes, went home, and told Chris, “That was pointless. I never want to see that man again. He just told me everything Sam will never do.”
Because of that man and because of the neonatologist who so negatively gave us the news of Sam’s suspected diagnosis in the delivery room, I was determined to somehow work to change the way diagnoses of Down syndrome are delivered and to teach people that the outdated notions of Down syndrome that existed decades ago are no longer correct and valid. And so, I now travel around our area giving presentations to medical providers about how to speak positively with new families about a Down syndrome diagnosis. And I work as a legislative advocate, trying to help promote legislation that will challenge these outdated views and help create new opportunities for people with Down syndrome.
So I suppose in a way, I should thank that geneticist for inspiring—in his negative way—me to walk a path I might not otherwise have walked. But instead, I still just feel annoyed about it. I’ve since had another diagnosis experience (for Theo’s chromosome microdeletion), and it was incredibly positive—it made me realize just how much a positive experience can impact a parent’s outlook, and how much a negative experience can do the same.
Earlier this week, I had to deliver a presentation at the very same medical facility where I had both of my experiences. I walked into a room full of geneticists and genetic counselors, and there was my nemesis, sitting at the head of the table, playing on his phone. He continued to play on his phone for the first several minutes of my presentation, while all of the other people in the room listened and were actively engaged, participating and asking thoughtful questions.
And then I think he realized who I was—and that when I spoke of my own negative diagnosis experience, I was referring to him. It was one of the more awkward moments of my life, talking about my experience with the subject of it all sitting right in front of me. But I did it. And I answered every one of the questions he suddenly started asking, which all seemed to me to have a slightly passive-aggressive tone to them. And I even held my own at the end, when he pulled me aside in the now-empty room and asked me another pointed question, in which he talked about how he tells parents that adults with Down syndrome will be happy, but never lead “fully independent, productive lives.”
I’m not a fighter. I’m not terrifically comfortable standing up to people. I’m especially not good at standing up to men—particularly ones bigger than me. But my god, when my son was born, I made a vow to never, ever let him down when it came to fighting for him, and I was not about to start letting him down by backing down from the very person who had made his future life out to be something without a lot of potential.
So I took a deep breath, interrupted the geneticist, and said, “I’m going to have to disagree with you on that. I think your definition of ‘fully independent and productive’ is narrow. People with Down syndrome are living more and more independently…”
He interrupted me and said, “Not fully independently…”
I interrupted him and replied, “If you’re talking about living across the country from their entire support system, completely alone and with no one ever checking in on them, you may be right. But if you’re talking about an apartment of their own, with someone to occasionally check in as needed, then I disagree with you. More and more adults are doing that now, as well as working in competitive, integrated employment—not sheltered workshops. I think you need to factor in early intervention and integrated schooling, too. It is making a huge difference in how prepared people with intellectual disability are to live independent and productive lives….”
My boss was there, and she backed me up 100 percent. And the geneticist decided to cut his losses and take off after more or less brushing us off.
I guess he thinks he knows better. I know he doesn’t. He may be a brilliant scientist, but I think he needs to open himself up to new ways of defining independence and productivity, and I think he needs to meet more adults with intellectual disability and recognize their persistence and potential.
I don’t think I’m ever going to change this man’s mind; I really don’t. But I do know that this child of mine, beautiful inside and out, never lets me down, and I will never let him down. I’ve got your back, little man. You just keep showing everyone what you can do.