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 7 – Advocate
My first
acts of enthusiastic advocating occurred when Alex started first grade. I met
with her teacher to talk about a success plan. One of my concerns from the
beginning has been the other kids — how would they react to Alex, and would she
be included in activities. I’ve always made it my business to meet with the
teachers before school started to brainstorm various approaches. My teamwork method
has always been well received, but due to funding issues, the resources
necessary to create the team are overworked and over committed. Thinking
outside the box has become status quo these days. I believe where there’s a
will, there’s a way.
One of
the things I did in first and second grade that worked well was meeting with
Alex’s class about a month after school started. As there were actually four
classes in each grade, Alex and I met with two classes at a time. Our goal was
to talk about Alex, demystify Down syndrome and answer questions. We started each
session by reading “Our Brother Has Down's Syndrome”
by Shelley Cairo. It’s the story of
a little boy with Down syndrome named Jai, as told by his sisters. It’s easy to
read and explains clearly that Jai is just like everyone else.

Alex and
I sat at the front of the classroom, read the book, showed the pictures and
stopped for questions along the way. We had practiced little sections for Alex
to read so her classmates knew she was fully vested in our sessions, all of
which were followed by a period of questions and answers. I still remember some
of those "family secrets” that young children like to share (but my lips
are sealed).
Self-advocating
is extremely important, and also very hard to teach. I believe Alex knows what
she must do in terms of making her needs known as well as standing up for her
rights. However, sometimes she simply doesn’t have the confidence and tells me
others ignore her. Like is the case with so many of her peers, while Alex
demonstrates poise in other parts of her life, standing up for herself is more
difficult
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 .
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
18/31
Book give-away: Expect the Best
19/31
Book Give-away: Practice Healthy Skepticism
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