I didn't end up reading a single one. Many of the guide books were written well over a decade ago. When it comes to health-related information, that may as well be a lifetime. Another problem I had with some of the books was the fact that they were written for the child who had every single characteristic and health issue related to Down syndrome. The books were boring and impersonal, and I felt like I was reading a college textbook.
I quickly returned those books to their owners or stashed them on my book shelf and never picked up another book about Down syndrome until recently. Instead, I relied on connections and experience. Most of all, I realized my child was every bit of an individual as anyone else and had his own set of strengths and weaknesses.
When I was offered the chance to review The Parent's Guide to Down Syndrome: Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis through Adulthood
by Jen Jacob and Mardra Sikora, I was so excited! Jen Jacob, the cofounder and vice president of the Down Syndrome Diagnosis Network, was one of the first people I connected with after Liam's diagnosis was confirmed. She immediately added me to a Rockin' Mom support group on Facebook, where I was able to meet other moms who were currently on the same journey that I was. I was able to watch the writing of the book unfold through Facebook, and I had a feeling this book was going to be so much different from anything else that was out there!
The Parent's Guide to Down Syndrome was the first book about Down syndrome that I read cover to cover. This book is full of what all those other books lacked. It's current. It's real. And it's personal. I found myself wanting to read "just one more page" and most of the time, I found myself wiping away tears. It's THAT good.
Jen Jacob and Mardra Sikora broke up this book into three parts, which is convenient for the reader. Even though I read the entire book, I wanted to go back and find a few passages to show my husband. The format made it so easy to find exactly what I was looking for!
Part One: The Basics covers information about Down syndrome, Prenatal Diagnosis, and Birth Diagnosis. It includes current and accurate information about Down syndrome and has a chapter geared toward a prenatal diagnosis and a chapter geared toward a birth diagnosis. It even includes information about sharing the news and finding support.
I cried my way through the birth diagnosis chapter because it took me back to the day Liam was born. I felt like I was reliving it all over again, but this time I knew better!
The tears started in the first sentence. By the time I reached the end of the introductory paragraph in the birth diagnosis chapter, I was sobbing. I'm crying even as I share this beautiful excerpt from the book:
"But those first confusing, terrifying seconds turn to minutes, then to hours,
and finally to days and months passing with your baby. You are smiling
again. Your baby is smiling, cooing and snuggling, and bonding with
your other children—and them with him or her. You realize that your
baby is just that: a baby, more alike than different in so many beautiful
ways. Down syndrome is now a part of your life, but it has not become
Part Two: The Journey is broken up into six chapters and geared toward every stage of your child's life. It covers Newborn to Six Months, Six Months Through Two Years, Ages Three Through Five, Primary and Middle School, Teenage Years, and Life for Adults with Down Syndrome.
Once again, I noticed the format is very user-friendly. When the time comes when I need to go back and search for information included in a particular stage, I will easily be able to find it.
Although Liam is currently nearing the end of the Six Months Through Two Years stage (Say it ain't so!), it was nice to read about what's to come. The included guide about IFSP vs IEP was incredibly helpful, considering I just attended my first preschool transition meeting. I'm feeling so conflicted about this HUGE upcoming change, so the Ages Three Through Five chapter was one that I reread after I went to the meeting!
I'm not going to lie. I started to feel more overwhelmed as I read the Teenage Years chapter, and that feeling only increased with the Life for Adults with Down Syndrome chapter. Just as I started to feel like I wanted to avoid thinking about Liam's life as an adult, the chapter ended on an incredible note.
Our Experience: Joshua’s Advice to a New Parent
I wanted to tell Holly’s friend, who just had a baby with
Down syndrome, “Oh, how wonderful for them!” Sure, I know
some of the struggles that are ahead. These young parents are
not in the same place I am now...because, with age comes a
lot of perspective. Oh, people sometimes call it “wisdom,” but I
call it “time.” And “learning from my mistakes.” And, “learning
to see the big picture.” These young ones? Well, I’m sure they
are feeling many emotions.
Things are more different now than even just twenty-nine
years ago, when I had Joshua. There seems to be more knowledge...more acceptance of
...more services for...kids with Ds.
I warmed up some “reruns” for Joshua’s lunch. That’s what
he calls “leftovers.” I decided to see what he would have to say
about the situation with Holly’s friend, and I tried to prepare
myself for anything he might say. I wanted him to say his honest opinions.
I said, “Hey, Joshua...a friend of Holly’s just had a brand new
baby boy...and he has Down syndrome, like you!”
He said, “Oh, wow!”
“What do you think about that?”
“That’s a pretty good kid if he came out like that,” he said.
I asked him if he had any advice for the new parents and he
asked, “What advice did you get when you had me?”
I told him how my friend came over to visit after we
brought him home from the hospital . . . about how she sat on
our couch and held him while we talked. She told me, “Just
I thought, “Well, that’s easy! Look how cute he is!”
(Joshua just grinned and grinned when I said that part.)
Joshua said, “I’ll go with that, too. Love him. And train him
up to be a man of God.”
Then he started quoting scripture after scripture at me, and
I could not even keep up. He ended his sermon talk with these
words: “I turned out okay, and he will, too.”
—Joshua ’s mom, Marty Garland
I sobbed my way through that quote, and once again, I felt like everything was going to be okay!
Part Three: You Are Not Alone provides support for all parents on this journey and focuses on connection. Both chapters include an abundance of in-depth information. Here you will find links to popular national AND international organizations dedicated to Down syndrome support and/or research.
The Parent's Guide to Down Syndrome is full of accurate and useful information. The authors share so many resources with the readers. From blogs to legal information to communities to health guides to other books and essays, they have it all covered!
I think the best thing about The Parent's Guide to Down Syndrome is how personal it is! There are quotes from a wide variety of parents in each chapter relating to the topics, and notes from the authors sharing their personal experiences. In several chapters, therapists (Physical, Occupational, and Speech) share their advice for the stage of life your child is currently in. There are even adults who have Down syndrome sharing their experiences!
The quotes and personal experiences mixed in with the in-depth information made it a great read! I was honestly surprised by how much I could relate to the other parents, and found myself nodding along to many of the quotes. I was touched by how real it was!
The Parent's Guide to Down Syndrome made me smile, laugh, and cry, but even more so, it gave me HOPE. It is the perfect book for anybody who receives a Down syndrome diagnosis!
Thank you to Jen Jacob and Mardra Sikora for sponsoring today's post! Congratulations on your incredible book, ladies!
You can buy The Parent's Guide to Down Syndrome at Barnes & Noble and Amazon.
You can find out more about the book HERE.
Liam and I want to give one of YOU a copy of The Parent's Guide to Down Syndrome. I purchased a copy as our Act of Kindness today, and we're giving it away to one reader!
To enter, simply leave a comment on this post telling me about the person you love who has Down syndrome! Giveaway will run until Saturday, March 26th, at 11:59 PM EST. Winner will be selected using random.org. Good luck!
DISCLOSURE: I received this book in exchange for my honest review. All opinions are my own.