September 25, 2010

Verb 2 – Research

As soon as possible after we learned Alex had down syndrome we began our research. We did not know anything at all about down syndrome, and we were terrified. I recognize now that this was one of the many factors that moved us out of our grieving phase. The more we learned the more I realized our lives would be fine, just like everyone else’s, only different. The research phase is life-long.

In 1993 we did not have a very robust internet so we resorted to more traditional forms of knowledge; books and people! As much as I love the internet I still believe there is nothing more important to a new parent with a child with special needs than a face to face or phone conversation; it provided an interactive and open forum that I have not found anywhere, except perhaps in the blog community.

When Alex was born, I was not able to "surf" the web to find reference materials on an as needed basis. Today, if I need information I can find it instantly. However, my mind does not work so well with bytes of knowledge. I still enjoy books, and often go back to my down syndrome library acquired over the years. Following is a list of the books I enjoyed.

Sixteen years ago, I did not know too much about down syndrome, What I thought I knew turned out to be erroneous pre-conceived ideas. I found the following book, bought twenty copies and gave to everyone in our extended families. My father was one of the first to read the book, which I knew from his newly enlightened demeanor.

Babies With Down Syndrome: A New Parent's Guide (The Special-Needs Collection)

As young parents we were always reminded to read to our children. "Where's Chimpy" was Alex's favorite. My goal was to have the words "down syndrome" become part of our language. This book was enjoyable to Alex and I could talk about the little girl with down syndrome while reading it to her.

Where's Chimpy (Albert Whitman Concept Paperbacks)

This is the book Alex and I read to her first and second grade classes. We used a "q and a" format which was very helpful in helping the children understand Alex was just like them, only a little different:

Our Brother Has Down's Syndrome

When Alex began school I found the following book, which I purchased for her teachers. I know at least some of her teachers' read these books as we discussed the strategies around learning in some of her early team meetings:

Teaching Reading to Children With Down Syndrome: A Guide for Parents and Teachers (Topics in Down Syndrome)

When I was looking on Amazon for these books - I also found the following:

Communication Skills in Children With Down Syndrome: A Guide for Parents (Topics in Down Syndrome)

Teaching Math to People With Down Syndrome and Other Hands-On Learners: Basic Survival Skills (Topics in Down Syndrome) Book 1 (Bk.1)

Gross Motor Skills in Children With Down Syndrome: A Guide for Parents and Professionals (Topics in Down Syndrome)

Fine Motor Skills for Children With Down Syndrome: A Guide for Parents And Professionals (Topics in Down Syndrome)

I also enjoyed a couple of inspirational books. I know there are now many more available; I really should update my library.

Expecting Adam: A True Story of Birth, Rebirth, and Everyday Magic

Count Us In: Growing Up with Down Syndrome (A Harvest Book)

I do need to recognize so many of the support groups, down syndrome sites and the blog community. There are so many resources available in cyberspace; a simple google search brings up hundreds of links to information. Search for a local support group, national/international information sources and follow some of the blogs. These newer tools will supplement all the learnings that are possible.


  1. This is a powerful topic that really resonates with many people. I was certainly touched. Thanks so much for posting. I look forward to learning more.

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