"Welcome to our HOOD!"

I live in Kansas, but 4 or 5 years ago, I decided to fly to Denver and attend a conference being hosted by the Colorado Fragile X Group – mostly to see how they did things and to scout out speakers for our newly formed Kansas Fragile X Group.  Shortly after registering online, I received a message from Cindi Rogers.  At that point I was her facebook friend but we had never met in person.  In her message, she invited me to stay in her home the night before the conference!  Well if you are a Fragile X carrier, or know and love someone who is, then you know how crippling our social anxiety can be.  Let me tell you, I was anxious from the moment she asked me until the moment she wrapped her arms around me and hugged me at the airport.  From that point forward, we laughed (especially when she ran out of gas!) and I LOVED watching firsthand her and her husband, Chris, effortlessly facilitate the life they have put in place for their sons, Jake and Joe. 

I learned so much from her and her family during that 24 hour period -- probably more than I have learned from pretty much anyone during my 20 years of raising a son with Fragile X Syndrome.  She's that good!.....well and I really am a firsthand, visual learner (I was a little disappointed after seeing a visual in the boy's bathroom that there wasn't one in the guest shower!).  Chatting with Cindi, and now reading her book, is like having a human link to a warm and fuzzy fantasy “library of Fragile X.”  She’ll be the first to tell you that she doesn’t have all the answers, but she’s willing to share her journey in the hope that it helps.  Believe me…..it helps!

The National Fragile X Foundation, now in California, was formerly located in Denver.  So through the years the Rogers family has had unparalleled access to rock star professionals in our world…..just to name a few – Drs. Randi and Paul Haggerman, Dr. Marcia Braden, Dr. Karen Riley, and Mouse and Tracey of Developmentally FX (SLP and OT devoted to our children with Fragile X Syndrome).  Cindi embraced that access and used what she learned, as well as her motherly instincts, to create a beautiful life for her family in the face of undeniable challenges.

I will never forget the evening I spent in their home, and the well-synchronized “Welcome to our hood” that I experienced.  I’m hoping you will experience it as well through her words in Becoming Mrs. Rogers. 

I wish I had a photo of the smile on my face when I woke up in the guest room to the sound of Joe jumping up and down on the floor above me (for sensory stimulation).  It's difficult to put into words the feeling of existing "different" than everyone else in your neighborhood and then to find yourself in a neighborhood that feels "normal." 

Cindi and I laughing on the side of
the road after running out of gas on the way
from the airport to her house.  I was
relieved to discover she is human!
Although part of me wonders if she planned it,
WITH VISUALS!

The speakers I was scouting! ....we had our heart set on
bringing Cindi, Mouse and Tracey to Kansas! And we
did!  I remember panicking when I asked Cindi what
her fee would be.  She said a number but she didn't
quantify it, and my brain jumped straight to thousands of dollars.
I had no idea how we would ever raise enough to make it
happen.  Alas, my brain took the wrong path and we
were able to make it happen!



I met Rocket during my visit!  I thought it was cool then....
You should see the newer version!  You'll read
all about this remarkable comfort zone in her book!

 

 

FREAK OUT!

Tomorrow will be the last planning I.E.P. meeting for Josh in the Blue Valley School District (Individual Education Plan -- required by legislation for all children with disabilities through the age of 21).  It is a time to look back, see where we've been and where we had hoped to be at this point.  It is also a time to FREAK OUT ..... I mean,  advocate for a successful, fulfilling adult life for my son outside of the school system.....yep, that's what I mean.

For my curiosity and to prepare my thoughts for tomorrow's meeting , I requested some documents that I had written for one of his early elementary I.E.P.s.  Wow!  They were exhausting to read.  First, it reminds me of magnitude of the yearly advocating I have done along the way, especially in elementary school and again in high school; and secondly, when I read the long-term vision for what I had hoped, we're not even close. 

When you start out with a child affected by disabilities, you really have no idea what they will be capable of, so you charge ahead on the premise that the more early intervention they have, the more they will be capable of later in life.  I'm attaching a picture of the document That I wrote when Josh was in second grade.  A lot of the items in it will be very familiar to my friends on similar journeys.  I have been advocating since 1995, before the internet, before facebook, before Community Support Network, before Fragile X was even a twinkle in the eyes of many of my FX friends.

I am slowly coming to the realization that there is NO time to FREAK OUT!  It's time to rewrite Josh's life and our goals for him to thrive and be happy as an adult.  At this point, all I really care about is his happiness, and that he will be taken care of in the likelihood that he outlives me.  This is my simple, yet daunting, prayer for today.  I hope my friends and family who pray will pray for us now like never before.  Those who don't pray, a positive thought and/or words of encouragement would be very appreciated.