Skip to Content

The Parent’s Guide to Down Syndrome

The Parent’s Guide to Down Syndrome

Please Share

The Parent’s Guide to Down Syndrome: Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis through Adulthood

After receiving a pre-natal diagnosis for Moxie via amniocentesis, I was scared. I think it’s more accurate to say that I was terrified, actually – I was terrified of having a child who would be arriving in the world with an extra chromosome, sporting Down syndrome.

I went through a cycle that seems to be rather typical: I needed stories of families who were raising a child with Down syndrome. I needed to connect with other mothers. I needed information about Down syndrome. I needed a community that understood.

And so I joined the Baby Center group, I ordered every book I could find about Down syndrome and I visited my local Down syndrome Connection.

All of those helped in some way. None was exactly what I needed, but none of them left me completely empty-handed either. Perhaps what helped me the most was reading the stories contained within the Gifts books, as well as some parent memoirs (Martha Beck’s book, Expecting Adam, immediately comes to mind, as does Kathryn Lynard Sloper’s book, The Year My Son and I Were Born). The medical books scared the crap out of me (especially the one with the little boy swimming on the cover), and resources were scattered all over the place. It was difficult to tell what group was what, and what I needed to be aware of and or/prioritize myself over.

Enter The Parent’s Guide to Down Syndrome

This book was written by people I know, Jen Jacobs and Mardra Sikora. What Jen and Mardra accomplished in this book is amazing.

They compiled seemingly every known US-centric resource related to Down syndrome and what a parent really needs to know and they put it all in order. They couched the information and resources with real-life stories from parents and best of all, with advice from people with Down syndrome themselves.

I’ve never seen anything like this book before.

It’s helpful. It’s informative. It’s comprehensive, covering pre-birth through adulthood, but it’s not overwhelming – you can jump around to the chapters that directly pertain to you. A great many aspects related to Down syndrome are covered – from Infantile Spasms (which was a huge concern of mine when Moxie was younger) to resources on developing your IEP’s (Individual Educational Plan). Some – like cross-disability diagnoses – are not, and there is a flub or two in language. Hopefully in the second edition these will be corrected, and the missing pieces (like dual diagnoses) covered.

The Parent’s Guide to Down Syndrome is good

What I love about what is covered is that nothing is on overkill – it’s really just enough to give you some information and point you to where you can learn more, or receive more support. The Parent’s Guide to Down Syndrome is like the cliff notes of parenting an individual with Down syndrome – the solid-gold nuggets of hard-won wisdom and knowledge distilled into an easy-to-read, well-organized and engagingly conversational book.

I’m also in there, both as a parent and as a resource (I get really embarrassed when I see my name in print, it’s like, “holy cow! That’s MEEEEEE, let me go and hide under a table now“).

A lot of my friends are in there, too – it was so much fun reading their stories and getting excited over seeing their names in print (“hey! There’s Missy! Jisun! Melissa! Deborah! David! Stacey!“). Pretty much everyone that I know and respect in the Down syndrome community is represented in this book through one of their personal experiences. I love that, not just because they are friends. For me, it’s proof that this book is actually written BY and FOR parents.

There is a living, breathing rhythm in the disability community that is, “Nothing About Us Without Us”. This book nails that for those of us who parent an individual with a disability: it is BY parents and it is FOR parents. It is a grassroots effort to gather voices in one collective. The voices are different – it’s not a book that is about everyone saying the same thing; it’s a book that is about what this experience is for a great many people, and what other parents have found helpful.

Some other quick things I wanted to mention:

  1. This book is US-centric; most of the information and resources are based around laws and resources in the United States
  2. This book is very current. The websites and information listed are very much in the “now” – there are internet-based groups, Facebook groups and supports, etc.
  3. This book is available at the links below if you want to buy it directly and not wait for the giveaways.

Giveaway #1: The Parent’s Guide to Down Syndrome

Just comment below to enter, or answer this question: “blue or yellow?”

Winner picked via on January 10th, 2016, announced on this blog and A Little Moxie’s Facebook page (

Giveaway #2: Grand Prize Giveaway

This is the big cahoonie of giveaways – a joint giveaway for all blogs that are participating in this book’s “Blog Tour”. The grand prize drawing will be January 15th, and you can win a bunch of stuff – like, “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. This resource package has a value of over $200!

Click the rafflecopter link below to join:
a Rafflecopter giveaway

Buy The Book Now:

Via Author Site

Through Barnes and Noble

Or Amazon

Via Indie Bound Booksellers


I received a kindle copy of The Parent’s Guide to Down Syndrome: Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis through Adulthood to review. All opinions on the book are mine, and I received no compensation for this review.

parent's guide to down syndrome book cover

Support This Site

Please Share

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Momma 'N Manila

Thursday 7th of January 2016


Wendy Greenwalt

Thursday 7th of January 2016

Blue :)


Wednesday 6th of January 2016

Blue for my son's eyes

Amanda Angelov

Wednesday 6th of January 2016



Wednesday 6th of January 2016


This site uses Akismet to reduce spam. Learn how your comment data is processed.