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Help your child succeed and thrive!
As a parent of a child diagnosed with Down syndrome, you may be feeling unsure of what to do next or where your child's journey will take you. In this book, authors Jen Jacob and Mardra Sikora share their experiences and guide you through life with Ds with expert advice from diagnosis to adulthood. Each page teaches you ways to support your child through major milestones; nurture their development; and ensure that they succeed behaviorally, socially, and cognitively. You'll also find valuable information on:
- Sharing the news with loved ones
- Transitioning into primary school
- Developing your child's social skills
- Discussing future opportunities, including employment and housing options
- Sales Rank: #246661 in Books
- Published on: 2016-01-01
- Original language: English
- Number of items: 1
- Dimensions: 8.90" h x .80" w x 5.90" l, .0 pounds
- Binding: Paperback
- 256 pages
About the Author
Jen Jacob is the cofounder and vice president of the Down Syndrome Diagnosis Network. As a part of her role, she creates, moderates, and manages small online groups for more than 2000 new and expectant parents. Jen is the author and a contributor for Unexpected: Stories of a Down Syndrome Diagnosis, available globally. She lives in Iowa with her husband and four children; her youngest son, Owen, has Down syndrome.
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.
Most helpful customer reviews
3 of 3 people found the following review helpful.
A Smorgasbord of Information. A work of heart.
By Sherry McCaulley Palmer, Author
There are several reasons this book is a MUST read for people who have a person with Down syndrome in their lives.
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.
3 of 3 people found the following review helpful.
this book does an amazing job of presenting realistic life experiences and showing that ...
By DLT
This is the first book I've been able to read with my husband. Facts and data are mixed with real life examples. Diagnosis thru adulthood, this book does an amazing job of presenting realistic life experiences and showing that there is nothing our children can't achieve. This book is a must read! I sympathized with the stories of prenatal diagnosis. Reading about the early months had me reminiscing over our own experiences and appreciating how far we've come. Reading about adolescence and adulthood taught me some things I didn't know and gave insight into our future. Thanks to Jen and Mardra!
2 of 2 people found the following review helpful.
Honest, Informative, Accurate, Comprehensive and Digestible. THIS is the book about Down syndrome you need.
By Jenny Di Benedetto
Everything you need to know about raising a child with Down syndrome, broken out by phases of life, including information from medical experts, therapists, educators and Down syndrome organizations, with perspectives shared by parents and individuals with Down syndrome. How do I share the news that my child has Down syndrome? What are medical concerns I should watch for prenatally and as my child grows up? When should we start therapies? What happens when it's time to start school? What are the various Down syndrome organizations? It's all in here, in an easy-to-read format, allowing you to take it in as you need it. This is the most current resource about "all things Down syndrome," written in an honest and straightforward manner. This is THE MANUAL you will want by your side through this journey.
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