The Parent’s Guide To Down Syndrome: Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis Through Adulthood is a hot-off-the-press book written by Jen Jacob (author, co-founder of the Down Syndrome Diagnosis Network and mom to a son with Down syndrome) and Mardra Sikora (author, writer, advocate and mom to a son with Down syndrome who is also an author).
Full disclosure: I received a free copy of this book and have agreed to read and review this book based on my opinion without compensation.
If I go back to the moment when Tessa was placed in my arms for the very first time, I noticed that something about my daughter was different than I was expecting but could not figure it out. She was my first-born child and I was just 24 years old. She had a rough delivery, and her face was swollen. Her nose was so small, her eyes were slightly upturned and almond-shaped. When she cried, her facial expression caught my attention. I told my husband that I could not tell who’s features she had. “She doesn’t look like either of us,” I said to him.
Because of her dramatic delivery, there were many medical professionals in the room after she made her grand debut. While we agreed she looked different, we were not concerned. Nor were we even close to prepared for what came next.
Our doctor had everyone leave the room, and said that there was something she needed to tell us. Even then, there was nothing alarming on my radar. “I am over ninety percent sure your daughter has Down syndrome. She is exhibiting the typical traits associated with Down syndrome.” (Read her full birth story here.)
While my husband and I were clearly caught off guard, our doctor sat with us and talked with us about the surprise extra chromosome she was certain my daughter had. We were shocked and maybe even a little upset that she would suggest that our perfect and beautiful baby had it–as though that suggestion alone lessened her in some way. Then she said, “Remember what you told me? You said at twenty weeks that you did not want any testing because it would not matter. That you would keep your child anyway, all things welcome.” She was right. We did say that and we absolutely meant it. Except we never considered or accepted that this could happen to a “young couple like us.” A rationale that proved how very little we actually knew about Down syndrome at that time.
What I knew about Down syndrome at the time of her birth was stereotypical; therefore the diagnosis crushed me. Even though our doctor provided us with good resources to start with and delivered her diagnosis positively, we were still very alone. I was desperate for support from families of children or adults with Down syndrome. I just wanted to hear from them what their lives were like. I wanted real-life stories and testaments from those who had been there; anything that would tell me we would be okay.
“She is going to be great. She will live a very normal life and you will, too. I promise.” That was the parting statement from our doctor after that heavy diagnosis conversation.
My doctor was right. We are living a good and normal life and our girl sure is great.
We went through motions and we healed. Looking back, I remember feeling guilty about saying things or feeling certain things because of my general lack of knowledge about what it meant for my child to have Down syndrome. I started researching on my own, only to be discouraged by Google’s shortcomings. So we read through books and pamphlets and I joined Down syndrome groups online or locally; soaking up any information I could. What I did not know once before, I learned in time through personal experience, advice from others, and books–although none as good as this.
The Parent’s Guide To Down Syndrome would have been a huge lifeline for me had it been around in 2010. Luckily for me, there is still a ton of great information in it that I already have bookmarked for different parts of my daughter’s life. The book covers diagnosis through adulthood, highlighting everything along the way. It is reader-friendly by allowing readers to skip parts that may not pertain to their situation at that time. Readers can also jump across various topics without getting lost in transition. My favorite part(s) of the book are the real stories as told by parents of children with Down syndrome. Real emotions, unique stories and honest perspective all contribute to the fact that each child is different and that we are all just going through the motions of parenthood one day at a time. We are all in this together, and no parent has to do it alone.
This book also offers current and accurate information about Down syndrome as well as the best resources available to support families and children; covering everything from early intervention to milestones in childhood to numerous health-related issues to IEP’s to school transitions, independence, employment and other matters of adulthood.
The Parent’s Guide To Down Syndrome is a definite must-have for parents who have just received a Down syndrome diagnosis, but is also great for anyone post-diagnosis. It is informative without being overwhelming. This book offers an honest glimpse into life with Down syndrome, while honoring the fact that each person is unique with their own attributes; and reminds us that when supported and nurtured, a child with Down syndrome will have the chance to grow and thrive–a sentiment shared by parents of all kinds.
A book like this will impact many families now and in the future, and I will absolutely recommend it.
Plus, there is a little excerpt from yours truly about sibling relationships. 🙂
How can you get a copy for yourself?
Barnes & Noble
Indie Bound Booksellers
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*First chance: Just leave a (positive) comment below and automatically be entered to win a free copy of The Parent’s Guide To Down Syndrome.
*Second chance: GRAND PRIZE – Includes an “I love someone with Down syndrome” tote, fun stickers, a registration to this year’s 321eConference, other book resources, and of course, a copy of The Parent’s Guide to Down Syndrome. (For those who have already purchased the book, this second copy would be a great donation to your local library, your DSA library, or another mom, dad, or friend.) This resource package has a value of over $200! Follow the rafflecopter giveaway (bottom of next page) here to enter.