June 12, 2008
Today is usually my FX Memories day. But today I wanted to share this video with all of you. It’s about another family who found fragile x. It resonates what so many of us have dealt with in regards to our feelings for the gene that caused it and the emotions in finding out.
Entry Filed under: Etc. . Tags: autism , family , fragile x , genetics , parenting , special needs .
Autism & Fragile X C’est Moi
Who are these people?! all names changed to protect our family
Kevin ~ dad
Beth ~ mom & fragile X carrier
Lauren ~ 17 & in 12th grade
Austin ~ 14 & in 9th grade
Matthew ~ 13, in 7th grade, has full fragile x mutation, and autistic tendencies
Rachel ~ 10, in 5th grade, has full fragile x mutation, and autistic tendencies
Theresa~ Beth's best friend since 6th grade & her biggest supporter
wanna email me directly? Fragile X Webring Check out Past Posts! Wanna see every post I’ve ever written or start at the beginning… -- Happy Halloween :)
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Wow! What a Month
Fighting Myself…and Losing
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I’m still here
RIP Ms. Shriver
On the agenda…
Change of Plans
School Registration SUCKED!
WW Flop
Cool new stuff…
She Won!
The lovely store fiasco…
FXTAS
Congressman Harper On FOX News
Monsoon
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Restful Weekend
A Smattering of Stuff
Fragile X Awareness Day PSA
Fragile X is All About Love
How Did Fragile X Find Me
FX Awareness Day Information from 2 of my Fav Ladies
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My Bloggy Vow
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Another Outlet
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Shopping whirlwind
Washington news from last week…
Dear corporate world or whomever handles this…
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Medicating Rachel
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Not on Call
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MLK Celebration Concert
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La Soiree
Update on Austin
Can you spot the FXS man??
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Happy Birthday Baby Girl
From Respite to Insanity
A Respite Weekend
No Kisses
silly conversation with rachel…
A new trend
Vacay didn’t quite go my way…
Getting Clean
Fragile X DNA Test
Looking Back ~ Favorite Story
Coincidence or Sixth Sense?
Do You Know What Today Is?
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Distracted…Not Me!
Anxiety and Board Games
Pondering…
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Autism Night Before Christmas
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Wish List
Matty present…
The Kindness of Others
Caregiving Assistance
Heartbroke
New IQ Testing?!
An email convo with my baby girl…
Sike
EWWWW
I was tagged – 4/4
Tough Times
Morning of Song
Still Steady…HA!
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UN! UN!!
2 weeks people
Where’s the Christmas Spirit
Heartache
My um…uh…well….ya know Bling
Happy Birthday Kevin
at least we have peace…lol
Autism Christmas Letter…
Reminder: Audio Webcast December 2nd, 2008
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Bad Germs…Bad!!
Matthews Doc Appt
Holidays Kill Brain Cells
Thanksgiving Thankfulness from a FX mother
The misdiagnosis of fragile X
Stop Spinning World…I need to get off
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Ewwww Boogers!!
In Awe
Awesome News
And these are the days of our lives…
Internal Keloid…sorta
Sickly & Stuff
Beyond Compassionate
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Money is Stupid
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Some Political Links…
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Ex
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come on already
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Sweet 16!?!?
Wrap my mind around it….
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Wordless Wednesday ~ IEP cartoons part 1
Librarian apology
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Happy Birthday Matt-man
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Matty’s dentist appointment
Mad Angry!
Survey
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Do you Pogo?
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Wordless Wednesday
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Little Better
this could be bad…
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R.I.P. Sunset
Wish
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Feeling a Bit Better
Guess What I Just Found…
Woohoo….it’s FRIDAY!!
Prayer Concern
I’m Beat
Wordless Wednesday ~ FXS kids
Sneaking in….
Tax Day
Day 2
Guest What!?!?
Ended Well
Blah
Be My Mommy?!
Just Stuph
Starting Therapy
A Vent
Wordless Wednesday ~ Signs of Spring
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Trip to the Doc
Baby Obsession
Welcome to the World Edward Thomas
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Just Imagine…
Adults with Fragile X
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Is Something Not Right or is it New Mom Jitters??
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April Fools Day Fun ~ Answers
April Fools Day Fun
Coming Together
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Jake’s Run
Busy Thursday
The First 6 Months with Matt
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Wrap-up of the Day
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I’m Free
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A New Chore
Inside our Walls
Bringing Home Baby ~ The 1st Month
Wordless Wednesday ~ Hiding or Self-Stimulation?
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It’s a Monday Morning
Spring Ahead
Trusera
Advocacy Action Alert
A List of Updates
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Toothbrush Update
Wordless Wednesday ~ Whatcha Studyin Momma?
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“Mean Girls” in Real Life
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Matt’s Ultrasound Memory
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Special Brother
Please Support a Fellow Blogger
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Oops I Did it Again…
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Don’t Leave Me!!
Check This Out!
Brain Fart ~ Memories
Fun Instead
Food
Band-aid for Snorts
Things I Have Learned While I’m on Bedrest
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Outraged!!
Blogger Awards for Vday
What!!!!
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Fragile X Webring
Shower, etc
Sicky Boy
Where’s My Bracelet??
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I’m Off
Favorite Posts Meme
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Gimme that Groundhog
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Presurgery post
Noodles not love
Wordless Wednesday ~ Bored Chef Series Part 3 of 4
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Another Snow Day
Wordless Wednesday ~ Bored Chef Series Part 2 of 4
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Day Off
Taggage
We are so proud
Hallelujah!
sssshhhh….
New Family Blog
The Ring
Wordless Wednesday ~ Bored Chef Series Part 1 of 4
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Happy Birthday My Baby
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Gotta Date
A Candy House
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Soo….
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Awesome Inventions in Taco Land
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Winter Break
New Page
Advocacy Update
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Santa MisBelief
Early Christmas Cartoons
An Early Christmas Present
Mad Angry
Closer to a Cure
Handsome
Wordless Wednesday
Three Hour IEP
Never Got Better
It’s Gonna Be a Monday
Nice Article
Synergy
A Friday Funny
For your holiday reading pleasure:
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How sad :(
Bras are not cool!
Mr. Prattville
Clarify
Autism Christmas Letter
My Free Day
It Begins….
Lost
Rachel’s Wreath
Those Crushing Words
Time for a Funny
Wordless Wednesday
I NEED Ideas
I Got to Meet the Baby
Happy Birthday!
Sally Needs A Break
Please No Shots
Rachel’s Letter to Santa
A Weekend Survey
On a Happier Note…
Gotta Vent! (PG-13!)
A Son’s Love
Library Smackdown
FRAXA News Report
Sally’s December 2006 Article
Christmas Party
The Latest on Tummy Trouble
Couldn’t take it…
Frustration!
Fragile X Syndrome FAQ
We Got Some Good Grades!
Let’s Meet Hunter
Turkey Day Recap
A Time For Thanks
I want one…
Do you see what I see?
Feedback from Students
Ultrasound
Kinda Freaking
Progress in Soccer Issue
Finally Happy
Advocacy Update
Under Construction
Matty’s Happy
Tummy Trouble Update
Advocacy Action Alert
Seven Weird Things About Moi
Update on Austin’s Appointment
Trip to the City for Austin
Update on our Soccer Fiasco
sick
More Suh-weet News!!
Suh-weeet News!
News from the Fragile X Research world
10,000 Visits!!
Loopy
Project DOCC
Houston, We Have a Cheater
STOLEN!!!
The Past & I Collide
Time Changes are Bull
The Things You Can Hear In My Halls
My Hubby
Who Says that MR People aren’t Smart!?
Teaching our Future
Happy Halloween!!
Change of Pace Answer
Change of Pace
League Director Response to Incident
Am I Out of Line?!
Irritants
Results
Opinionated
New Topic
So Sleepy
Only Children
Doctor’s Appointment
Thanks :)
Twists and Turns
Straight A’s Baby!!!
Absolutely the BEST News that I have Heard All Day!!!!
No Post
Math Sux!!
Home in Bed
Please send a prayer
An Open Letter
Reading & Sharing
Research Article
I’m a Mom to 2 Teens
National Fragile X What!?
Double X
Great News!!
Conferences Day 1
Double Doozie
Raising Awareness
What a Morning!
The Pumpkin Patch
FXS Parents….It’s Time to Say Thanks :)
Picture
Disappointment
The Best Day EVER!
Can’t Sell the Kids
Pretty Picture
Children for Sale….
Cursive Conundrum
It Happens in Threes
Morning Math Musings
National Fragile X Survey
I Got a Date!
It’s Fall!!
Time for a Shout Out!
Autistic teen Tasered in Calif.
Brain Defects are Good Things Now!?
Austin’s More Descriptive Diagnosis
From a Sad Note to Jubilant Note
Some Sad News
The Latest on Austin
What’s with the BO!?
Austin Update
Please Think of Us
Patriot Day
Read My Face
Key discovery for fxs
Sporty Weekend
I got a present!!!
This Just In!!
Jello Pastel Cookies
How Rude!?
Horsey Article
Sally’s September Column
Labor Day
Another teen
no post
A Little Discrimination Going on
$300 for WHAT!?
Ho-hum
Doris Buffett Challenge News
I am Alive
For Love of the Game
My “Aaahhh” Moment
Round One Goes to….
First Day of the 2007-2008 School Year
I’m Thinking Like An Ant
How Autistic Are You?
Special Olympics Golf State Games
Helping Out on the Water
I Am Officially a Horrible Mother
Independence
Special game lets players touch ‘em all
5000 hits!!!
My baby is coming home!!!
An Even Downer Day
Down Day
Just for fun
Young Campers Sail Against the Wind
Conversations
Denial Won’t Take Care of the Problem
Operation Hide Out
The Battle
Michelle Duggar has 17 kids!!!
Not to shabby
I got GOOD news!!!
No Whining
Mercy
Weekend Report
Rdean Day
Puppy Update
Embryonic Research Article
Tough Choice
Oh My Gosh…
Golf Area Games
The Migraine
Operation Yard Work Complete
Totally Stoked
Straight out of Matt’s mouth
Ride raises awareness of FXS
Therapy, TLC Help Danny Deal with Challenges
this and that
Aaaahhh….
Kisses
The Music In Me
Peace
The van
When it rains it pours…
What a Day it Was…What a Day it Will be
Sally’s Latest
The Pool
Vacation Monday
Crickets
7.7.7
Nail Clipping
Love
Good 4th after all
What’s Next…
Time with the other kids…
Trepidation
Surprise! Weddings & free time
What’s Important In Your Marriage?
Lauren is bloggin’
Dinner time, Austin 1:1, & Rachels dumped
Forehead smacker of the day…
Holy moly
This, That and The Other
Sally’s Letter in Response to the tragedy
Too much
Benoit & FXS
Mini Update
Miss Lauren
Cure for Autism & FXS in mice!?
Counseling and tough morning…
The Royal Hiney
Knotty Tummy
Fruitful Weekend
Birthday Party Funny
Lazy Hot Friday & other ramblings
Matt’s reaction
Special Olympics Golf
Diagnosis
Update
New Method Stinks
Can you feel the love?!
Same ol’ stuff
Good Weekend
Writer Clark Visits Weehawken
Just stuff
1.5 million ‘Thomas & Friends’ toys recalled
Well Child Check
IMMs Caskey Developed DNA Technique
Feeling ucky
Good luncheon
Day 2 of New Method
Sportz Stuph
Trying Something New
This Entertainer Overcame More than Stage Fright
Watch the abstract and keep your feet in the boat!!
Never underestimate the power of music
Those *#!^ Kids!!
Transition Not Smooth
I’m a Buddy!
Article 2: Raise the bar on FXTAS: Recognize It
Article 1: Michael R. Tranfaglia
Noodles, fingers and more
Right on Target
New fiction book with a focus on Fragile X
Odds & Ends
Ref’s calls don’t always go your way
Our (mis)adventure
3rd grade & Wednesday
Not much to report but found a great story…
Matt’s Getting There
It’s Over!
Last Day of School
Still Trying
My Babies are Home
Running for Inclusion
Fragile X Mouse
The Meltdown & other happenings
Don’t Break a FX Girls Heart
And the verdict is…
Email from Matt’s teacher
Sick day
Icky transitions
I’m 30 Today
It’s a Monday :)
National Lampoon Revisited
Better watch what u say!!!
Reflecting
I’m a Grandma!!
Where’s that Rock
email from teacher
News of the Day
Botox for FXS?!
Mother’s Day
Good day on the lake
Strange Twist
Disabilities no barrier to water sports success
My morning funnies
Dale Jr is leaving DEI!!!
Just various stuff
IEP went good…
Matt’s normal day
Crying in a Corner
It was a Monday
NFXF Webcast on Behavior on May 8 – free
Are we there yet??
Praise God for Sunday’s
I Think I Can Survive :)
A Little Hopeful
Not Feeling so Thankful…or Blessed
Sport encouraging physical, social skills
Being Thankful
Blessed
Matt’s Birthday Dinner
It May Not Be Menopause
A mom’s worth
Matt is 11 :-)
Houston, we have an IEP
No news and spondylosis
Yard sale raises money for good cause
Stubborn maybe?
Similar platforms, different personalities
Saving a Kitty
Rachel kicked a goal!!
Schools Alert for Conditions
Pizza
My Plan
You Want Him to do What!?
FMR4
Ideas and Doctors
Taggage
Select Category
Etc. (924)
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