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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

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  1. Shanfrog1 says:

    I would love to read this. I donated the book with the little boy swimming on it. After reading just a little of it, I wanted to burn the thing. If I don’t win one, I guess I’ll buy one!

  2. I love blue, but I feel like yellow never gets enough credit.

  3. This sounds like a book for me. I get overwhelmed with too much info, so a collection from other parents would be just right.

  4. I’d love to read it! SO ready to read something real and refreshing!

  5. Answering the question yellow. I am expecting a daughter with DS in February. This book looks like a great resource.

  6. MommaToOne says:

    I read many, many books after our pre-natal diagnosis and found, like you, that I took bits and pieces from each. it would be lovely if this book does take all those bits and put them in one easy-to-read place. As we enter the stage of public schooling I’m curious to see what this book has to say about that topic.

  7. Jennifer Page says:

    I have been seeing very good things about this book. Very interested to read it.

  8. Genie Peterson says:

    I might get too impatient and buy before the drawing, but in case I am underestimating my will power: I will go with blue. In the interest of full disclosure, I actually like them both the same. Thanks for sharing the resource!

  9. Amanda Davis says:

    Yellow! My favorite!

  10. Not a fan of the blue and yellow! High school and college rival colors and I still can get over it seven years later

    I would add Jennifer Graf Groneberg road map to holland to the first book list too!

    Have a great book tour authors!!

    Love that so many real people are experts and looking forward to thoughts and details from adults with DS

  11. Jennifer Sutton-Tusing says:


  12. Yellow is so cheerful! Makes me smile like my son!

  13. Jodi allred says:

    Yellow! For my extra special girl Sunshine?

  14. Blue for my sweet heaven sent angel Bryce <3

  15. Bit of both Blue and Yellow

  16. Patricia Mapps says:

    Yellow! My RILEY girls favorite color! Bright and cheerful just like her!!

  17. Amy Ulschmid says:

    Blue and yellow! Love this.

  18. Great review! Love that this amazing resource will help so many parents! 🙂

    1. Adrienn! You are #36 – you got yourself a book! congratulations!

  19. Blue for my son’s eyes

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