So, I’m writing a book about growing up with my brother. And, having never written a memoir-style book before, I thought it would be good to do a little research. I picked up a copy of Expecting Adam from the Provo City Library, remembering my mom telling me about it years ago. She said it was about a woman who used to be Mormon (which I am), talking about giving birth to a boy with Down syndrome (which my brother has). Great! This will fit perfectly!
Or not. In fact, within the first fifty pages or so, I found myself just kind of staring at the book thinking, “Who is this woman?” Don’t get me wrong – it’s incredibly well written. And I was expecting this pregnancy and diagnosis to be a real change of perception for Martha, the author. I just don’t think I was prepared for a perception change of this magnitude.
The problem was, she started off so confoundedly ignorant. And not in the “I don’t know much about Downs” kind of way. More in the “I didn’t know Downs people were capable of intelligent thought” way. And I sat there, completely stupefied by it all, and it slowly dawned on me just how abnormal my childhood was.
My brother has Downs. (He also has Autism, but we didn’t realize that until much later.) He was born when I was three years old. I grew up thinking Down syndrome was about as “different” as red hair. Uncommon, yes. An actual problem, of course not! So when I picked up this book, I was looking for ideas about the organization and style of my own book. By the time I was halfway through, however, I realized the gaping hole I would have otherwise left in my writing: I assume everyone is familiar with special needs.
And if Expecting Adam showed me anything, it is just how uncomfortable some people can be with the idea that a child is imperfect. I’ve always assumed that every child is imperfect; I was born perfectly healthy, with a reasonably high IQ, and I still managed to shut myself into my own locker in junior high school. I take for granted that everyone understands that we all have different strengths and weaknesses, and some of those – like Down syndrome – are more visible to others, while others – like a short temper or an anxiety disorder – can be hidden a little longer. But Martha Beck has pointed out to me that many people go their whole lives suppressing this, putting on a good face, and pretending to be perfect. And for some inane reason, they think they’re succeeding.
This book frequently made me want to throw things across the room. (See “short temper,” discussed above.) And then it made me just want to sit down with people and talk, and tell them about my own experiences. It made me want to tear down the walls people put around themselves and just talk to the real person inside us all, the one that’s so terrified of getting eaten alive that it never comes out to see the sunlight. And as angry as I was at all the people in Martha’s life telling her to get an abortion, or ignoring her new baby, or at Martha’s own doubts – which made zero sense to me, because I never went through this paradigm shift – I mostly just wanted to find all those people and give them a copy of this book.
I’ve frequently read the phrase, “If you’re offended by this, I’m offended by you.” And even though I wanted to throw eggs at the homes of some of the doctors and nurses and Harvard professors in this book who thought that Martha’s son Adam would never amount to much, this book has taught me that that phrase is ridiculous. I propose replacing it with, “If you’re offended by this, please tell me why. I’d like to share my own experience.” If you’re uncomfortable around people with special needs, that’s where you’re at. You don’t have to pretend otherwise. But please read this book. It will help answer questions, break down fears, and resolve confusions. And at the same time, you’ll end up with questions you never even thought of.
Well, there’s my soap box. Expecting Adam is a beautiful book, a sacred journey through the author’s soul, and a life-changing read. ♥