October 16, 2012

16/31 Book give-away: Understand

In honor of Down syndrome awareness month I will be publishing excerpts from “From Grief to Celebration, How One Family Learned to Embrace the Gift of Down Syndrome” for 12 days. Each day features a different verb/chapter and at the end of the month we will give-away three copies of the book, signed by Alex. Priceless! 

I wrote, "From Grief to Celebration, How One Family Learned to Embrace the Gift of Down Syndrome"  to share this story of love, life, magic and down syndrome. Our critically acclaimed book details our journey through ten verbs beginning with grief, ending with plan and incorporating one bonus verb, celebrate. I hope this can be a resource to help others embrace, understand and learn. The book is available through this blog ($12.50) on-line booksellers ($13.99) and kindle (reduced to $3.99 during October).

Verb 6 – Understand

Understand has two entirely different applications for a family with a child with special needs. We need to understand our children, and, at the same time, understand others and their frame of reference about Down syndrome. We try to practice the “put yourself in their shoes” rule most of the time, but we are no where near perfect and my success rate is not 100%, but pretty close.

Understand Alex

There are two critical parts to understanding Alex: her behavior and speech. Her behavior is directly related to how she feels about herself, and her occasional acts of frustration are an extended result. I still don’t know exactly what makes the synapses in her brain connect, but I do know they bond at a different speed than mine.

I’m always trying to figure out what makes Alex tick, what I can do to help her master a new skill and how I can help her make sense of something. I often need to remind myself that she is different than me, as well as my other kids. I try to put myself in her shoes, even though I know her methods and ways will likely puzzle me for years to come. Regardless, she is entitled to all the same privileges enjoyed by any child.

Understanding Others

It took me a really long time to understand how others perceived Alex — not with a lack of compassion but from ignorance of Down syndrome. In my mind, ignorance can be addressed, and we try to educate the uninformed at every opportunity. Research, incorporate, promote and include all helped us to reach understanding, and it is the one verb I use every day unfailingly.

We’ve met many people through, or, I should say, because of Alex. Most of these people have been kind and supportive, but not everyone is, so I try to understand.

Following are the top 12 most irritating questions/statements I hear. I believe these comments are based on ignorance and I try to respond from that perspective, but sometimes it’s harder than others……

To read more please enter our give-away:

These are only two requirements to be entered in the drawing - and Alex will pick the winner!
1. Please like "The Ordinary Life of an Extraordinary Girl" on facebook (link on the sidebar), or
2. Follow this blog, on networked blogs (also on sidebar)

Of course, you will need to tell me you did this, either as a comment or by e-mail theextraordinarygirlllc@gmail.com .

Stay tuned
17/31 Book give-away: Advocate
18/31 Book give-away: Expect the Best


  1. I'm loving the way you use the words as hooks, as ways to describe and give us a picture of Alex and of your family and of growing with Down syndrome.

    1. Thank for all your long words and encouragement

    2. This comment has been removed by the author.


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