Wednesday, March 16, 2016

The Parent's Guide to Down Syndrome

A few months ago I was asked to review an incredible project: a new book called The Parent's Guide to Down Syndrome; Advice, Information, Inspiration and Support for Raising Your Child from Diagnosis to Adulthood, by Jen Jacob and Mardra Sikora.  This book has been heavily promoted among parents in our community, and has been the result of an intensive collaboration.

I was happy to have the opportunity to contribute a small part to the section on open heart surgery, and have been excited to review it here on Our Cora Bean.

I began reading my free copy of the book in January, just before my sweet girl's fifth birthday. Most of the time the events and feelings surrounding Cora's birth and first few months of life feel like they're in the distant past and are so far removed from my current reality.  So I was honestly surprised to find myself drawn so viscerally back to my initial feelings and memories from those early days. 

We learned of Cora's Down syndrome diagnosis after she was born, and I spent my days during her NICU stay stationed by her isolette, poring over books like Babies with Down Syndrome.  Without the convenience of a smart-phone or access to the internet, and with very little real knowledge about Down syndrome, that information felt like my lifeline. I loved the information, the photographs, the parent accounts and the descriptions of what to expect during early childhood. But it still felt like information was missing, and I found myself having so many more questions.

Now, as I watched my almost-kindergarten-aged daughter race around the house giggling with her sister, I was again reading a comprehensive book on Down syndrome designed for new parents, but this time I found myself not only wiping away tears, but nodding my head in agreement, and being heartily impressed by the resources and varied perspectives that the book offers. 

The book starts with explanations and definitions, works through the diagnosis (both prenatal and post- birth), gives input on finding support, processing and sharing the news, and then moves into common experiences over the course of your child's life. It covers medical care, surgeries and hospital stays, feeding, and many other challenges of those early months, as well as insight on day-to-day life. As the book progresses, it discusses your child's education, therapies, and the journey from infancy to adulthood. It touches, at least briefly, on a comprehensive range of concerns and experiences and seeks to give the reader a big picture, while offering details and resources for more information at the end of each well thought-out section.

Throughout, personal accounts from parents, siblings and people with Down syndrome pepper the pages, (including some of people I know online and in real life!) giving insight into the evolving and varied points-of-view of the families, and offering the immensely valuable perspective of individuals with Down syndrome.  So often it is the families of people with intellectual disabilities who speak for them, so including a range of voices of those with disabilities is invaluable, allowing us to see the people the book speaks of as real, whole, valuable individuals, and also helping to offer a glimpse of future possibilities to parents concerned for their children's futures.

Overall I was impressed with the range of information covered and the large number of voices included.  But out of all the great things included in The Parent's Guide to Down Syndrome,  my favorite may be the oft-repeated reminder that each of our children are unique, and that their experiences will be their own. When your child is a baby, especially a baby with a diagnosis that brings with it stigma and so many unknowns, it is natural to seek out the one right answer, the one right experience, the one example that will show you a picture of your child's life, and your family's lives by proxy. But this book wisely points out that there are no right answers or right experiences, that the path of each of our children and each of our families will vary widely, and that that is part of the beauty. If each parent reading this book were able to truly take that to heart early on, I'm sure it would help alleviate much concern and worry.

For me, as I fret about the upcoming IEP process that will determine so much of my daughter's future for the next dozen years, it is a poignant reminder to read Jen Jacob's words,  "Life is, of course about the journey for our children, but also so much about our often-parallel journey alongside them."   I appreciate the opportunity to recognize and respect my daughter as the unique and amazing person that she is, while still recognizing the important role that we, her family, play as we support her along her way.

Interested in getting your own copy of this book

  • You can buy it here on Amazon or Barnes and Noble.
  • You can enter the giveaway on Our Cora Bean to win your own copy!  Enter here: a Rafflecopter giveaway.
  • You can enter the Grand Prize giveaway, including an "I love someone with Down syndrome" tote, an advocate coffee mug, a variety of books including The Parent's Guide to Down Syndrome, a t-shirt, stickers and more (over $150 value) enter here:  a Rafflecopter giveaway 



7 comments:

  1. Your giveaway button isn't working for me. I can't wait to read this new book. I dogeared my copy of Babies with Down Syndrome.

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    1. I just tested this and it's working for me -- is it working for you now?

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    2. Yes I just tried it and it worked. :)

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  2. Absolutely fabulous review -- it makes me want to read the book right away. Great insight, Leah. I'm sure this blog post will encourage many folks to reach out and share their experiences. Thanks!

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  3. I always enjoy your thoughts on these things!

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    1. Hopefully I've entered the raffle correctly.

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  4. And the winner is Stephanie!

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Thank you for sharing your thoughts with me!