October 20, 2012

20/31 Book Give-away: Plan

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 10 – Plan

In our world, plan has two practical applications. Alex plans for Alex, and John and I plan for Alex.

Alex is the most organized person I know. As with most people with Down syndrome, she’s a visual learner. She follows instruction well but for her to really learn and retain information it must be written down. Alex knows this and writes things down all the time. I find stickies and notes all over her room of things she must do, or things she wants to do. She gives me her Christmas list in June and her birthday list in December.

Every Sunday, I print out our weekly schedule and put it on the refrigerator. If I’m late, Alex reminds me. If I forget one of Alex’s activities, she writes it on the calendar for me. She adds grocery items or movies she wants to see. Her school planner is similar — not only does she have her homework assignments, but she also has her social activities.

Alex uses her cell phone as an alarm as well as a calendar. Her phone goes off at 6:45 every morning (although getting her out of bed is a different story, just like my other kids — and me! —, she doesn’t like to get out of bed). I often hear the calendar go off on her phone, sometimes to let her know her favorite TV show is on, but often it’s also a reminder to do her homework.

Before the birth of each of our children, John and I planned and dreamed of their futures. Schools, sports and other extracurricular activities are all a part of what forms our children’s futures, and we have adjusted, helped manage and guided as needed when new or stronger interests emerge.

Our hopes and dreams for Alex’s future are the same as for Courtney and Tom’s. I want all three of my kids to have fulfilling jobs, healthy relationships and lives overflowing with love. I want them to give back to their communities and be grateful for the opportunities they have in their lives. However, in Alex’s case we’ve needed to be more diligent in working towards a different type of future, which is simultaneously one of independence and safety.

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
21/31 Book Give-away: CELEBRATE
22/21 Book Give-away: TBD

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