Thursday, January 7, 2016

Book Review: The Parent's Guide to Down Syndrome.

A week or two ago, I received a copy of "The Parent's Guide to Down Syndrome" by Jen Jacob and Madra Sikora.  In the interest of full disclosure, I received a copy because I contributed to the book.  Many parents I know in the Down syndrome community were also contributors.

The book is organized starting with information about Down syndrome and diagnosis, then by age of child, with lots of parent quotes as well as quotes from adults with Down syndrome.  There are abundant current resources, which is a pro and con.  Because online resources often change quickly, some may be outdated quickly, but on the flip side, there is plenty of great information available.  The information on prenatal testing is very current, but again, changes rapidly.  (In the five years since Ellie's diagnosis, the scene has changed dramatically, and even since we had testing with Caroline, the accuracy of the NIPS has been questioned a bit, especially for conditions other than Down syndrome.) There are also new general Down syndrome resources listed along tried and true, for example, the DSDN retreat which just occurred for the first time alongside conferences which have occurred for decades.  I liked that the book referred to my favorite source, and the books available there.  The book provides resources for parents in almost any situation, with lots of links, Facebook groups, and other books referenced.

In the early chapters, most of the common health issues were listed, many with parent stories.  I did note an absence of a duodenal atresia parent story.  This isn't terribly surprising, however, as there aren't a lot of parents blogging about that experience.  (An exception is right here!  Me!)  However, there were parent stories about plenty of other newborn issues including heart defects, breastfeeding and NICU time.  The book also covers some basics of Early Intervention and IEPs.  This is another case where the book is super-current, but law changes may cause a need for update sooner rather than later.  This is true of all books addressing education right now as we've moved on from No Child Left Behind.

Later chapters cover a nice to-do list for adulthood, specifically some of the paperwork involved, and include more self-advocate information.

Some overall thoughts:

It's an easy read, and easy to flip through to a topic of interest/skip a topic of non-interest.  Adults with Down syndrome contributed, following the creed "Nothing about us without us."  A lot of ground is covered in a  short space, making it a good glimpse into a topic with resources to dig deeper.  The tone of the book feels peppy, which I didn't mind, but which I've heard bother parents reading other resources.  Many of the contributors have young kids (including me).  While this makes our experiences very current, I would love to read the parents of older kids and adults sharing about their speech therapy or other early intervention to get a longer view.  I know many kids with Down syndrome bloom late when it comes to speech.

This book joins the existing and wonderful ranks of books by parents for parents. I love and respect a great number of the parents quoted in the book, which made it a fun read for me personally.

Who is this book for?  Someone who wants a general overview of raising a chid with Down syndrome from birth to adulthood who wants a lot of parent stories.  Compared to "Gifts" this falls onto the more informative and less inspirational side of the chart.  I think the age range covered would overwhelm many new parents, and I would send them first to the books here, and provide "The Parent's Guide to Down Syndrome" later.  This book is more memior-style than "Babies With Down Syndrome." (Many parents feel "Babies With Down Syndrome" is too "gloom and doom."  I personally liked it, possibly because my daughter had numerous health complications and I found the book informative.  A few years on the Down syndrome board on Babycenter has taught me that I'm in the minority with that opinion.)

In fact, here's what I send to parents:

Everyone: Diagnosis to Delivery or Welcoming a Newborn with Down Syndrome, depending on if they have a prenatal or post-natal diagnosis.

People who wants stories and inspirational: Gifts, for the compilation.

For people who wonder where either achievement or God fit in, who are open to Christian themes: A Good and Perfect Gift.

People who like memoir in general: Bloom and Roadmap to Holland.

Fact people and teachers: Babies with Down syndrome and all the Woodbine House books on motor/speech skills.

I would put "The Parent's Guide to Down Syndrome" somewhere in the middle.  It would be a good starting point after the initial diagnosis book to see what kind of information/stories resonate.

And a giveaway!!

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  1. Thanks for the review, I've been intrigued by it and wanting to read it.


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