Down Syndrome: Must-Have Parent Guides

If you’ve been following along with us for long, you know that our journey to discovering that our daughter has Down Syndrome was an unusual one, and I will always be honest with you and tell you that those initial conversations with the doctor and waiting on the blood work to be processed and receiving word of her diagnosis was an incredibly scary period of time for us. Fear of the unknown felt overwhelming in moments, but so did the peace and joy that God has continued to gift us with over the past several months – and I will always be quick to share that part of our story, too.

When our journey with Down Syndrome began, I immediately became information hungry. I wanted to get my hands on any and all information that would assist us in helping our daughter in any way that we could, but I quickly realized that there really weren’t a lot of resources out there to help me. The “Down Syndrome” shelf at the library held very few books, and most of them were memoirs written by other parents of children with Down Syndrome. At the time, my heart wasn’t ready to read things like that. I realize everyone is different, and some may find reads like that encouraging to them as they begin to travel in to unknown territory, but me? I wanted facts. I wanted statistics. I wanted medical information. I wanted bulleted checklists of the things I needed to be doing. I didn’t want to read anything emotional (I was working through that piece of things with the Master Designer.) – I simply wanted to get to work!


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After hours upon hours upon hours of research and reading, I have found the following books to be the most helpful in guiding me through the ins and outs of working with our daughter at home, and if you are a parent of a child with Down Syndrome, my hope is that you will find these resources as helpful and encouraging as I have. Yes, we partner with outside individuals for regular therapy sessions, but as a mom, I have found these books to be fantastic guides for me:

Down Syndrome - Must Have Parent Guides

Down Syndrome: Must-Have Parent Guides

Babies with Down Syndrome: A New Parent’s Guide – Throughout those first months, this book was exactly what I was looking for as I found it easy-to-read but also helpful in answering the multitude of questions I had!

The Parent’s Guide to Down Syndrome – At some point during those early days, the author of this book, Jen Jacobs, reached out to me and asked if she could encourage me by sending me a copy of this book. Oh, if she only knew what a gift she sent my way! It was helpful in those early days, but I continue to refer to it often and will do so time and time again in the coming years.

The following three books are more text-book in style, but they are full and overflowing with practical tips and hands-on activity ideas for you to do with your child – The best part? There are lots of pictures included to help guide you! Initially, I tried to manage by borrowing them from our local library, but I quickly realized that I was going to want a copy of each of these books so that I could refer to them for years to come.

These books are broken up in to age/developmental stages, so what I like to do is visit them every 3-6 months or so – simply reading the next chapter and taking notes that apply to our current stage – then closing the book and waiting to read further until we’re at that point. These books are large and reading them cover-to-cover would be overwhelming! So I have kept them on a nearby shelf and referred to them as we’ve gone along in our journey, and they have been so helpful in guiding me as a parent.

These books have been so helpful to me, and as far as encouraging my mama’s heart, I have enjoyed connecting with other families who are walking the same path. I have found some encouraging friends on Instagram – like-minded friends who celebrate our Creator and celebrate their perfectly designed children.

I’ve decided God writes the best stories. I wish I had understood this sooner.

Want to read more of our family’s story? We have made it available as a free download to anyone who might be encouraged by it, and we would love to send it your way!

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