The Parent's Guide to Down Syndrome

Today we’re talking about one of our “Awareness Partners” at The Mall – the great new(ish) book by Jen Jacobs and Mardra Sikora – The Parent’s Guide to Down Syndrome.

First, to answer the question “What exactly is an Awareness Partner?”

In order to help us maintain and promote The Mall, we’ve created three types of listings. The first is the most important – Self-Advocate listings. These are completely free of change and no kick-back or commissions of any kind are taken from these businesses owned by people with Down syndrome.

The second type is our “Awareness Partner” listing. These are available to business/products owned/created/written by parents or non-profit groups that promote awareness and positive examples of Down syndrome. We ask that these businesses donate $25 / year for a listing and one social media share per month. The third group is our “Support Partner” listings – offered to for-profit businesses that provide services/products that support people with Down syndrome and their families. These are available for $50/year and have the same benefits as “Awareness Partners.”

Now, on with the real reason for this post — to introduce this great, one-of-a-kind resource guide for parents!

Of course, I’m slightly biased about this book since Mardra has been integral to everything The Road has done since its inception, so let me allow a few others to tell you their thoughts:

I've had a couple other parenting books for children with Down syndrome, but this one covers everything in one book! From diagnosis through adulthood, it has it all written by two moms, one with a child with DS and one with an adult with DS, with lots of advice includes from other parents. Any question you can ask and you'll find an answer in here or find a reference that can guide you to the answer. I love that there is focus on inclusion, independence, and future planning!


Everything you need to know and nothing you don't. The real parent testimonials the authors have added make this book even more touching and personal. It's an amazing read, a great resource and by far one of my favorite books on the subject.

This is the most current, inclusive and thoughtful resource book on Down syndrome I've ever read. It's well organized (from pre-birth through adulthood) and very easy to read. This is the perfect book for health care providers to provide to their patients after delivering a prenatal diagnosis of Down syndrome. It includes all the necessary subjects and also provides information on how to get connected with important organizations and parent groups (this was the most valuable part of my journey as a new parent of a child with Down syndrome). Please get or recommend this book to anyone interested in learning more about Down syndrome. I promise they will thank you for it.










As you can see, I’m not the only one who loves it! But, since I am the one writing this – I’ll let you know, my favorite parts of the book are the self-advocate stories. Jen and Mardra made sure that this book was truly “Nothing about us without us.”  The voices from adults with Down syndrome, like David Egan and Connor Long, are priceless.

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

Jump on over to The Mall to visit this great resource and get your own copy!

And if you, or someone you know wants to become our next “Awareness Partner” or “Support Partner,” we’d be happy to have you!



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