What we did and when we did it. Sometimes.

What we did and when we did it. Sometimes. People, places and events to remember.

Tuesday, October 9, 2012

31 for 21: Babies with Down Syndrome (a book review)

I received Babies with Down Syndrome: A New Parent's Guide as a gift only a few days after Ben was born.  My friend Ann asked another friend (who also has a child with Ds) what would be helpful, and her friend suggested this book.  The tag line on the cover reads, "The complete, compassionate guide to your child's first five years," and - for the most part - I agree. 

Babies with Down Syndrome includes a TON of information.  The edition I have begins with a forward written by an adult with Down syndrome, an introduction by the editor (a mom of a child with Ds), and a first chapter explaining what it means to have Down syndrome.  Those pieces were helpful.  The forward gave me hope for the future, the introduction welcomed me into the Down syndrome community, and the first chapter clarified why the doctors thought Ben had Down syndrome and what that meant scientifically.

The rest of the book was a little overwhelming.

Take Chapter 3, for example: "Medical Concerns in Babies with Down syndrome."  The long list of potential medical concerns is scary.  After reading that chapter, I would sit with my baby and start diagnosing him with everything from Hirschprung's to leukemia to Infantile Spasms.  In retrospect, I think it would be better to use Chapter 3 as just a reference.  I can always look something up if I'm wondering about it - if Ben's eyes are doing something funny or he's vomiting a lot - but I don't need to know about all the health problems he might have.

Fortunately, I did not read the book straight through.  I kept it on the nightstand next to my breastpump, and when I was pumping in the middle of the night, I would read a section at random.  I found myself engrossed by the Parent Statements at the end of each chapter.  These are just short quotations from moms and dads about their experiences with their child(ren).  Two of my favorites: 
"We had talked about adopting a child with Down syndrome probably a year and a half before our daughter was born.  I think we thought about it so hard we split a chromosome."
"My reaction now when I see a baby with Down syndrome is to think 'Oh, how nice.' But it makes me feel strange if people say, 'Oh, they are wonderful children,' because that is stereotyping.  They aren't all wonderful all the time than any other children are."
I found the chapters on "Adjusting to Your Baby" and "The Daily Care of Your Baby" practical and informative when he was 0-6 months old.  When I felt anger or grief, it was good to know that I wasn't alone.  And it was good to think about family routines and early learning.

As Ben has grown, the other chapters have become more interesting.  I'm not as preoccupied with Ben's health - and I know more about who he is and what he's learning - so "The Development of Babies with Down Syndrome" (Chapter 6) becomes applicable.  The explanations about therapies and Early Intervention make sense now that it's all begun.

I would recommend this book to any new parent of a child with Down syndrome, with the caveat that it is meant to help through the first five years.  It is not necessary to have all of that information right at the beginning.  In fact, it's too much information!  But it is good to have on your shelf for reference as your child grows.


And just because it's fun to see pictures ... here's Ben when he was around a month old ...

And here he is at one year old, destroying a magazine I left lying on the floor.   :)


  1. I was so overwhelmed with the medical concern chapter that I gave the book away!

    1. I know! That's the worst chapter. I was already keeping my eyes open for signs of heart failure - it didn't help to have a long list of other ways his health could be affected.

  2. I could totally see how that book would be overwhelming! But you know me -- I always like to have as much information as possible. :) I liked those parent statements, too. I also really appreciated the overview of history they gave at the beginning -- how people view Down syndrome differently than they did fifty years ago, and how much early intervention and therapies can help.