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The Parent's Guide to Down Syndrome: Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis through Adulthood Paperback – January 1, 2016
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About the Author
By day Mardra Sikora balances a patchwork of community, advocacy, work, and family. She believes in the power of words and writes both fiction and nonfiction to advocate for and with her adult son Marcus. You can find her and Marcus on the blog Grown Ups and Downs; Facebook; Twitter; as well as on various blog networks, including The Huffington Post.
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Top Customer Reviews
When I found our daughter had Down syndrome, I wanted something that was going to level with me but not bring me down. I didn't want to feel sad or down about my coming child. I just wanted to be prepared. This books does that with its positive tone as well as with its offering of happy parents. Having a child with Ds is NOT the end of the world, and with this book new parents can start to see that it's going to be okay.
Let’s start with the obvious. The way it is presented gets two thumbs up. Beginning with the basics, the authors walk the reader through the process. What exactly is DS? And what does it mean for parents, siblings, and other loved ones? What are some of the challenges? What are some of the capabilities? This is a book that sets out to answer those questions, and many more.
Although it contains a wealth of information from beginning to end, the book does not bore you with that which is irrelevant. Beginning with a person’s knowledge (or lack of knowledge) regarding diagnosis, prenatal care, and questions to ask medical professionals, the book contains a smorgasbord of things a personal might want to know, but because of the format, a reader can glance through bulleted lists and avoid “information overload,” (as stated on pg. 20) allowing to pick things that are pertinent to teach individual’s situation, making it so much easier to navigate and process the extensive research that has gone into this compilation.
One of the things I liked most about this book is that the authors do not claim to know it all. Rather, they draw from the experiences of other parents, who, just like them, have shared pieces of their journey in the hopes that it will help others.
It is easy for special needs parents to often feel as if they are going it alone, and for that reason, hearing from several sources provides is an understanding that every person develops at his or her own pace. Clearly conveyed, no two people are alike.
There are so many things to appreciate about this book, it is like winning the lottery of information. One such chapter centers on finding the right medical professional. When I read the suggestions, I couldn’t help but wonder what life would have been like for us if we had known some of the things to look for. Down syndrome is, indeed, a specialized field, best trusted to those who know the language. In addition to a list of the different types of professionals who may be a part of the healthcare team, there is a great list of questions to ask when interviewing a physician (pg. 79).
Another section which spoke personally to me was the one that talks about breaking the news to others. My adopted son is a young adult with DS. One of the most difficult things for us was how to tell our families. What would I have given, if I’d had this book to see how others had approached this delicate subject.
The Parent’s Guide to Down Syndrome is rich in resources. Seeing the connections to others who have lived with or are living with Down syndrome offers an amazing opportunity to have that crucial support.
Taking every good thing into consideration that jumped off the page as I was reading this book, there are two things that I believe are my favorite reasons for loving this work of heart, presented by Sikora and Jacob.
The first states clearly on page 20 — “The only true obligation is to your child and your family.” How often did I need to hear that, as I was raising my son. How desperately I needed someone to “know” and to “get it.” Not to sit in judgement, counting my failures, yet, simply sharing information that could help me, while at the same time, assuring me that “No two families have ever chosen, or will ever choose the same path,” (pg. 21). How about that? It’s okay not to be just like everyone else! Thank you, Mardra and Jen! My son is 25 now, and someone has finally, FINALLY, said these words to me. As Moms, you know how important that is. Congratulations on knowing what to say and how to say it.
The second favorite reason for loving this book is the quote it begins with, because I believe it sums up what all parents of people with Down syndrome know. You can find it in the dedication:
“The two most important days of your life are the day you were born and the day you find out why.” — Mark Twain
Yes, this is a long review. But a book like this has been a long time coming.
Can I give this ten stars?
This. Is. How. It’s. Done.