Hey everybody, guess what time it is? It's book review time!!
Please read on for my very first book review of The Parent's Guide to Down Syndrome by Jen Jacob and Mardra Sikora.
Full disclosure: I received a free copy of the book and offered to share my thoughts on my little ole' blog.
On day two of Ellie's life, the Geneticist came to talk with us about Down syndrome, and with him he brought a list longer than my arm of the dreaded "potential health issues". The hospital also gave us a book (that shall remain nameless) that was filled to the rim with the same potential issues- from delays, sight issues, hearing issues, heart issues, gut issues, thyroid issues, issues, issues, issues! I didn't look at the book that day. As I gazed at my sweet bundle wrapped in pink I didn't feel comfortable thinking of her as a list of "what if's". She was my beautiful baby girl and I craved real life information. I needed to read stories about love and hope.
Once I settled in at home I went online and ordered a bunch of books for myself, all memoirs about Ds; A Good and Perfect Gift, Bloom, and Expecting Adam just to name a few. I read personal blogs and connected with other moms on the internet. That original book I received from the hospital is still tucked away on the bookshelf, collecting dust three years later.
So this leads me to my first ever book review. Thank you to my friend Jen Jacob (co-founder of DSDN) who mailed me a copy of the book so I could read it and share my thoughts. When Jen told me she was writing a book with Mardra Sikora I was giddy. Mardra is an amazing writer/advocate, and mom of Marcus who is a young adult with Down syndrome. Marcus is the author of an awesome kid's book called Black Day: The Monster Rock Band. These two gals are famous in the Ds world, and writing a book together? Are you kidding me? I knew immediately it would be a game changer.
The Parent's Guide to Down Syndrome covers it all. It is chock full of resources from front to back. It covers the prenatal through adulthood stages of raising a child with Down syndrome. Every single topic within the book is relevant and important. But here's my favorite part: what sets this book apart from every other book I've read about Down syndrome is that it includes hope and love. Within each topic there are real life accounts of living with Down syndrome. The commentary is from parents as well as people living with Down syndrome. THIS. This is exactly what I needed in those early days. THIS is what I was craving, to hear from the people who were living it. The people who were there to tell me "welcome to the club" and "your going to be OK". And now three years in, it is still what I need. I will be referencing this book for the next 18+ years I'm sure of it.
One other huge plus for me was the neutral way in which the information was presented. The world of Down syndrome can be controversial in the number of avenues a parent can take, whether it's neurodevelopmental therapy, vitamin therapy, PT/OT/EI/ST, schooling options, inclusion versus seclusion, and the list goes on. The information is presented professionally and leaves the reader feeling empowered with the resources needed to make decisions that work for their family.
If you have a child with Down syndrome, or are expecting a child with Down syndrome I highly recommend you grab a copy of this book for yourself. This will now be my go-to gift for new families I encounter who are just starting out on this journey. Thank you to Jen and Mardra for creating a resource for families for years to come. I wish I could go back three years ago and read this book, to know that I am not alone and never will be. What an amazing feeling that is.