I was supposed to post this earlier but of course other stuff came up.... I myself have just started my journey into the world of Fragile X. We are waiting for the blood work to confirm (FYI in AB that blood work will take 3 months or so to come back). My 8 year old son most likely has FXS and as it sits we have no idea what that means for his future. FXS is the biggest cause of cognitive delays and it primarily affects boys (since they only have one X gene from mom). The following is a guest post....
We
are so excited to announce that Cindi Rogers first book, Becoming Mrs.
Rogers is now available on Amazon.com at the link below. This book was a
labor of love
for
Cindi, as well as her husband, Chris. The process has been a wonderful
learning experience and going forward will continue to require more
learning.
This book is a memoir of sorts about her life (and Chris') in dealing with
the
birth and subsequent diagnosis of fragile X syndrome for their two
boys. The timeline travels from birth to present day and covers lots of
different issues like school, behavior, therapies and day-to-day life.
It will take you through some downs and eventually some ups, only to
come out with moments of joy and hope. It was an emotional journey for
me while writing it, for Chris while reading it, and we hope for you,
too.
We
also hope that you might consider reading it, and/or sharing it
(forward this e-mail if you like) with others in your life that might
benefit from such a story.
Buy here:
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Becoming
Mrs. Rogers is the true and heart-felt story of one couple’s journey
into acceptance following a devastating genetic diagnosis for both of
their sons. Their story, its highs and lows entwined with its wisdom and
compassion, has been a beacon of hope for thousands of families
struggling with fragile X and other autism spectrum disorders.
Fragile
X is a common and inherited cause of learning difficulties, affecting a
child's entire world, including social and behavioral problems as well
as cognition and speech. Rogers not only tells her story, but also gives
advice for new parents, sharing facts about…
* the physical and behavioral characteristics of Fragile X
* the effects of Fragile X on learning, functioning and daily activities
* medication and therapy
* how fragile X affects the family.
Cindi Rogers and her husband, Chris, share the
perspectives and tools they embraced in order to help their boys be as
happy and independent as they can possibly be. It is a story of
challenges, tears, joy and hope.
**A
portion of the proceeds of this book are donated to the Rogers
Neighborhood FX Family Fund which in turn offers scholarships to the
NFXF International bi-yearly FX Conferences.**
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Cindi Rogers
Cindi
is the mother of two sons, ages 23 and 25, who are affected with
fragile X syndrome and autism. Since receiving this diagnosis, Cindi has
become a leader and symbol of hope within the fragile X community. Her
positive attitude, creativity and defining can-do attitude has inspired
families and professionals worldwide. Cindi and her family have
travelled to conferences around the world to present her innovative
strategies, helping families not only to live with fragile X, but to
also thrive. It has become her personal mission to share techniques to
help families generate ideas that they can implement in their own world,
while helping their children with fragile X syndrome to live happier,
more independent lives. Today, Cindi serves on the board of directors
for Developmental FX in Denver, a non-profit that helps families just
like hers learn to thrive in the face of fragile X syndrome. She lives
and works with her husband and two sons in Littleton, Colorado, and
together they love travelling the U.S. in their RV named Rocket.
Connect with Cindi:
Facebook-
Twitter- @MrsRogers2014
---On the blog find great website resources as well as bloggers to follow and enjoy!
