The Parent’s Guide To Down Syndrome – Book Review

The Parent’s Guide To Down Syndrome:  Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis Through Adulthood is a hot-off-the-press book written by Jen Jacob (author, co-founder of the Down Syndrome Diagnosis Network and mom to a son with Down syndrome) and Mardra Sikora (author, writer, advocate and mom to a son with Down syndrome who is also an author).

Full disclosure:  I received a free copy of this book and have agreed to read and review this book based on my opinion without compensation.

If I go back to the moment when Tessa was placed in my arms for the very first time, I noticed that something about my daughter was different than I was expecting but could not figure it out.  She was my first-born child and I was just 24 years old.  She had a rough delivery, and her face was swollen.  Her nose was so small, her eyes were slightly upturned and almond-shaped.  When she cried, her facial expression caught my attention.  I told my husband that I could not tell who’s features she had.  “She doesn’t look like either of us,” I said to him.

Because of her dramatic delivery, there were many medical professionals in the room after she made her grand debut. While we agreed she looked different, we were not concerned.  Nor were we even close to prepared for what came next.

Our doctor had everyone leave the room, and said that there was something she needed to tell us.  Even then, there was nothing alarming on my radar.  “I am over ninety percent sure your daughter has Down syndrome.  She is exhibiting the typical traits associated with Down syndrome.” (Read her full birth story here.)

While my husband and I were clearly caught off guard, our doctor sat with us and talked with us about the surprise extra chromosome she was certain my daughter had.  We were shocked and maybe even a little upset that she would suggest that our perfect and beautiful baby had it–as though that suggestion alone lessened her in some way.  Then she said, “Remember what you told me?  You said at twenty weeks that you did not want any testing because it would not matter.  That you would keep your child anyway, all things welcome.”  She was right. We did say that and we absolutely meant it.  Except we never considered or accepted that this could happen to a “young couple like us.” A rationale that proved how very little we actually knew about Down syndrome at that time.

What I knew about Down syndrome at the time of her birth was stereotypical; therefore the diagnosis crushed me.  Even though our doctor provided us with good resources to start with and delivered her diagnosis positively, we were still very alone.  I was desperate for support from families of children or adults with Down syndrome.  I just wanted to hear from them what their lives were like.  I wanted real-life stories and testaments from those who had been there; anything that would tell me we would be okay.

“She is going to be great.  She will live a very normal life and you will, too.  I promise.”  That was the parting statement from our doctor after that heavy diagnosis conversation.

My doctor was right.  We are living a good and normal life and our girl sure is great.

We went through motions and we healed.  Looking back, I remember feeling guilty about saying things or feeling certain things because of my general lack of knowledge about what it meant for my child to have Down syndrome.  I started researching on my own, only to be discouraged by Google’s shortcomings.  So we read through books and pamphlets and I joined Down syndrome groups online or locally; soaking up any information I could.  What I did not know once before, I learned in time through personal experience, advice from others, and books–although none as good as this.
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The Parent’s Guide To Down Syndrome would have been a huge lifeline for me had it been around in 2010.  Luckily for me, there is still a ton of great information in it that I already have bookmarked for different parts of my daughter’s life.  The book covers diagnosis through adulthood, highlighting everything along the way.  It is reader-friendly by allowing readers to skip parts that may not pertain to their situation at that time. Readers can also jump across various topics without getting lost in transition.  My favorite part(s) of the book are the real stories as told by parents of children with Down syndrome.  Real emotions, unique stories and honest perspective all contribute to the fact that each child is different and that we are all just going through the motions of parenthood one day at a time.  We are all in this together, and no parent has to do it alone.

This book also offers current and accurate information about Down syndrome as well as the best resources available to support families and children; covering everything from early intervention to milestones in childhood to numerous health-related issues to IEP’s to school transitions, independence, employment and other matters of adulthood.

The Parent’s Guide To Down Syndrome is a definite must-have for parents who have just received a Down syndrome diagnosis, but is also great for anyone post-diagnosis.  It is informative without being overwhelming.  This book offers an honest glimpse into life with Down syndrome, while honoring the fact that each person is unique with their own attributes; and reminds us that when supported and nurtured, a child with Down syndrome will have the chance to grow and thrive–a sentiment shared by parents of all kinds.

A book like this will impact many families now and in the future, and I will absolutely recommend it.

Plus, there is a little excerpt from yours truly about sibling relationships. :)

How can you get a copy for yourself?

Amazon

Barnes & Noble 

Author website

Indie Bound Booksellers

Enter for a chance to win below!

*First chance:  Just leave a (positive) comment below and automatically be entered to win a free copy of The Parent’s Guide To Down Syndrome.

*Second chance:  GRAND PRIZE – Includes an “I love someone with Down syndrome” tote, fun stickers, a registration to this year’s 321eConference, other book resources, and of course, a copy of The Parent’s Guide to Down Syndrome. (For those who have already purchased the book, this second copy would be a great donation to your local library, your DSA library, or another mom, dad, or friend.) This resource package has a value of over $200! Follow the rafflecopter giveaway (bottom of next page) here to enter.

 

Blank Spaces and Birth Stories

Baby books.  I stink at them.  Some people love them and some people even don’t have them.  I fall somewhere in the middle.  I love the nostalgia of them and I do have them; but I have failed to document each tooth that came in and on what date, and I did not always write down milestones as they happened.  I have the family information wrote down, the first pictures (most just loosely placed inside), footprints (at least one of the girl’s), what a package of diapers currently cost, and what they came home from the hospital in and first haircut locks that may or may not be in the incorrect child’s book. I went to work on the girls’ baby books the other day, and realized that I have recorded most of the girls’ milestones on this blog because it is the only place I can keep things organized without little hands scrambling it all up.

I think baby books are important for our kids too–a piece of their own history they can look back on and an awesome way to know themselves better.  But there is one space at the beginning of Tessa’s baby book that remains blank, and every time I open her book I see it. There are three lines given for me to share her birth story. Three whole lines.  Ever since I started filling in her baby book, I have intentionally left that spot wordless to avoid feeling a bit of pain; always telling myself that some day I would fill it in–just not that day.

To be honest, I am not entirely sure how to write it for her.  And sometimes when I see it sit empty, I have to catch my breath because I so badly want to fill the space. Tessa’s birth was a mix of typical and non-typical experiences, but I can’t possibly sum it all up in three little lines.  I know because I tried.  Maybe that is all most people need–just a few short lines to describe the splendor of welcoming a child into the world.  But what about those of us who need more space.  What about the births that did not go as planned?  The surprises, the heartaches, the fears and the unexpected; where love and loss simmer silently together in the melting pot of birth stories. Because there are many of us out there who need a whole page, not just a few lines so that we can share with our children how they entered this world.  Or remind ourselves of the time when we became parents.

Tessa’s birth was the most defining moment in my life.  I went to the hospital in the middle of the night to deliver my first child.  My daughter was on her way, and I was blissfully unprepared for traumatic delivery and the diagnosis that would all happen within that twelve hours; forever changing me from that point forward.  And looking back, I prefer it that way.  I would not change a thing.

I know there are more of me out there; who had a birth that did not go quite as we planned.  Those who struggle to write out their stories when they can’t rewrite history; to relive those moments and to feel it all over again.  Sometimes it doesn’t feel fair and that is because sometimes it just isn’t.  It stays with you forever.  You will encounter people who will not fully understand how you choose to get through it, and that is okay.  It is your experience and it deserves to explanation to anyone.  We grow from our own experiences and navigate multiple levels of joy and grief in many different ways.  But as for me, I am one of the lucky ones.  After two non-typical birth experiences–one quite serious–I brought both of my girls home.

Now please understand that I am not on some quest, shaking my fists and calling out baby book printers across the globe to increase the lines given for birth stories.  Seriously.  I just want other parents to know that each birth story is beautiful and meaningful; and reliving each of mine is an awesome trip down memory lane.  So I relive them by writing them out and reading them; remembering the moments in my life where time literally stood still.

If you want to write out your story but you were only allowed a few lines in that baby book, then I have two words you can start with:   See attached.  

That is how I am starting Tessa’s.

meeting