When our daughter was first diagnosed with Down syndrome at birth, I knew very little about her condition. I had vague fears of what turned out to be outdated information: I thought she would likely die young. I thought a list of "nevers" had been tacked on to her life: never get married, never go to college, never live or work independently... I thought she would be segregated from her typically developing peers. I thought her life would contain pain and that my life would contain sorrow.
Back then, the standard book for parents like me was called Babies With Down Syndrome: A New Parents' Guide (now in its third edition). It corrected some of my misconceptions: The life expectancy of those with Down syndrome has been on the rise for decades. People with Down syndrome work, live independently, get married, and go to college. And, perhaps most importantly, people with Down syndrome live happy lives almost all of the time.
Although I appreciated the factual information offered me in this book, I was also glad to see that two parents of children with Down syndrome—Jen Jacob and Mardra Sikora—have recently written another book addressing new parents, The Parent's Guide to Down Syndrome. In Jacob's words, "The inspiration behind this book was to pair accurate, up to date information with real life accounts from parents and those with Down syndrome." The book walks through the basics about Down syndrome, but the bulk of the material consists of information about each stage of a person with Down syndrome's life, from both a parental or personal perspective and a more clinical one.
I wish this book contained images to correspond with the stories and quotations shared, and some readers may find themselves skimming through the personal accounts. With that said, one of the things I needed most in the beginning of my journey as a parent of a child with Down syndrome was to know that we weren't alone in our fears or in our reasons to celebrate. Reading story after story helps assure new parents that their experience is shared. This book offers new parents a safe way into the community of parents who have children with Down syndrome. Each chapter also offers a range of websites, books, and other resources for further research.
Ten years ago, when I was first reading books about Down syndrome, I didn't like them. I now suspect that the books weren't really the problem; rather my attitude toward disability in general and Down syndrome in particular was the real barrier. It's possible that new parents reading this book will experience the same reaction I did way back when, but I suspect that the many compassionate and positive stories within The Parents' Guide to Down Syndrome will break down barriers while also providing invaluable information along the way.
Amy Julia Becker is the mom of three kids who love broccoli and hot dogs, and who ask for lollipops every day! Her guilty pleasures are Chardonnay and Diet Coke. She is also the author of Small Talk: Learning from My Children About What Matters Most and A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny. Visit her at amyjuliabecker.com.