January 16, 2009
This pulitzer prize winning video features developmentally disabled adults…one with fragile x syndrome. Check it out!!
Entry Filed under: Etc. . Tags: down syndrome , fragile x , pulitzer , video , youtube .
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 :)
Bye Bye FXSmom
WW: The Original Bus = Short Bus!
My favorite season has arrived!!!
Crystal Ball
Gosh Sis
It Happened…Finally!!!
My Twins ~ Details
WW ~ My Twins
Back to School
Wow! What a Month
Fighting Myself…and Losing
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May take a longer break…
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
So what about you….
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
Fragile X Awareness Day
Reality TV for Me!
Did that REALLY happen??
A $ Funk
What to Post
Botox for Fragile X Research
Dental Fleecing
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Quick Update
How Does Your Monday Go?
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Fragile X Friday ~ It Seems So Easy!?
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1:1 Time With Rachel
Handouts for Special Needs Parents, etc
Another Cyst
Not Again
Enjoying the 80’s
Fired!!
Out of the mouth…
Be Safe Theresa!!
Welcome to Womanhood
My Mini Me Transformed
Quizzical
I’m going on strike….
Don’t Forget the 1/2 inch
National Fragile X Foundation 25th Anniversary Video
The Mouse!
Happy Bday to….
A new year, a new routine
My Helper
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Matty’s Class Trip
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Coming Up…
Happy Bday to Moi
Cast for Kids
WW ~ Parenting Tips #2
Not again! Oh yeah. Again.
WW ~ Parenting Tip #1
Elizabeth Onderko
My Mother’s Day Present
Happy Mother’s Day
Feeding the Fam
Mr. X
Catching Up
My Bloggy Vow
Guess What!?…
Have to Take a Break
Happy Easter Peeps (I don’t know why I <3 that word)
My Little Mexican
Matthews good day
Interesting article…love to hear your thoughts
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Do you know what today is!?
Tools
Another Outlet
A look back at Fragile X-band
Rachel’s Vindication
First Date!?
Keep those baggy pants…
Shopping whirlwind
Washington news from last week…
Dear corporate world or whomever handles this…
Coping with a Diagnosis
Medicating Rachel
Rachel’s IEP
Give up?
Spring Slump
Excuse me!
Fun while Matty’s sick this week
New Fragile X Community
Sick Kid
Student Hosting
I have a new nephew….
WW ~ Defy the groundhog!
He’s a Smart One!
What do I do?
Gwendolyn Strong and SMA
Love is…. For V-day
I’m an Anomaly
conferences for big kids
Friend Break-up
Respite Go Away!
Not on Call
FX Carrier Survey
Are you wearing red?
Sibling Love
To all my surrogate mothers out there…
She’s Got Confidence!
I Have an Imposter!!
Fragile Xtras Newsletter
Rough week…
First Blog Post
MLK Celebration Concert
It’s an Award Winning Day
It’s a Miracle!!
Bullying Intensified
La Soiree
Update on Austin
Can you spot the FXS man??
Advocating isn’t just for the special kids
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?
One Smart Turkey
Distracted…Not Me!
Anxiety and Board Games
Pondering…
Gone, Away, Seperated, Missing, Gone
merry xmas friends….
Autism Night Before Christmas
WW ~ Purr
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!
WW ~ When was the last time you saw this?
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
Nix the Breakables
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
And another one bites the dust…
Ewwww Boogers!!
In Awe
Awesome News
And these are the days of our lives…
Internal Keloid…sorta
Sickly & Stuff
Beyond Compassionate
Money Update
Money is Stupid
Why Lord Did You Make Me Nice!?
WW – Genetics
Some Political Links…
My Little Helper
Sick Girly
A boy and his dog
Good Saturday
It’s Destiny
Rachel’s Crush & other budding news
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Problem or Normal?
Pimples or Rash!?
A Mother’s Sixth Sense
No kids :(
Happy Halloween 08
Camp Offers Help for Autistic Kids
WW – Safe :0)
Please Lord Let me Have a Job by Friday :(
Are we moving or not!?
My Prize Arrived
Annual Review at work
not THAT!
Resourceful
Boundaries
No Job
Pumpkin Patch 2008
Weekly Focus
Egg Donation Article
Photo Meme
Accomplishment for NFXF Advocates
Back to Work, Death Threat, & House Rules
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Coming Back Up
Disappointment in Myself
Family (Tranfaglias) Faces Challenges Of Fragile X
Still Sick…Still Stressed
I Be Sickly
ugh…darn it
Ugh!
Trusting Our Parenting
Moving Decision
Out of Shape
Minocycline for fragile x?!
Fragile X – Hitting the Mark
Taggage!
Austin’s Great Adventure
WW- Hold my Heart
Funneeeez
Weekly Focus ~ sep 29
Top 10 Reasons I MIGHT BE Worlds Worst Mom
The kids
My-Grain!! Ow—eeeee
Or not…
Sold = Homeless?
1861
In Memory
I don’t care what you say Super Nanny…
Easy Peasy IEP
Seriously Freaking Out!!
Some FX Research Results
WW-Blankie
CDC Awards Fragile X Research!!
Our weekend!
Top 10 Reasons I’m NOT World’s Worst Mom
Experiment
when the world stopped
AmEx not FX
WW – I Be Happy
Next up…
Busy in this Crazy House
Middle School for Mat..
Short Conversation
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Treadmill Incident
Treadmill=1, Beth=0
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Better
Shoulda Been Monday
Too much = 0
Lolcats WW – Vision Exam
Aha! Moment
Onto Other Realities…
Potty Room Privacy
Take 2
From the top of the mountain…
Siggsi’s FX Ride on TV!
Coincidence….
School 2 Sports
Good First Day
.5 of an update
Nervous Mommy
Blonde Moment of the Week
Beautiful Poem
Teacher Switch-a-roo
NFXF’s Position on Tropic Thunder
Morning LOL
Just keeps getting weirder…
Yucky :(
August 12
Back to School with a Bang by Dr. Marcia Braden
Have Purpose, Will Transition by Dr. Marcia Braden
Mini conversations
Chick Magnet
NFXF Detroit Preview
Rachel’s Funny Fill-in
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“Breaking Dawn” Thoughts
Fragile X new video
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Fragile X Pedition Begins TODAY!!
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Organized
A Normal Day
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Warning!!
Ex
Gone…but not forgotten
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Quiet :(
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Sshhhh…..
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National Fragile X Awareness Day
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come on already
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It’s here
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Sunset
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Autistic toddler kicked off plane
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Determined
Smack
Angry
Sooo….
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Uh oh
Work
He’s Got the Look
Family Doc Update
Home again…home again
Happy Fathers Day!!!
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Friday the 13th
If I was adopted…
Ok…ok…
Fragile X : A Family’s Story
Overwhelmed Frustration Overload
Team FRAXA
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Sweet 16 pictures
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Fragile X service dog
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Party
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Pregnancy and Labor Taggage
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Random Thoughts
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3rd Times a Charm!?
Sunday Bonding
need….aaiirrr
Sicko’s
Loooo-serrrrr
Sucking it up
Sick…again :(
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Round 1 IEP’s
That time of year again…
Party Plans A-brewing
Single Mom
Happy Mother’s Day
Beee-u-teee-fulll
Woohoo!!
Sweet 16!?!?
Wrap my mind around it….
Dx-Day
Wordless Wednesday ~ IEP cartoons part 1
Librarian apology
5 Things Meme
Teacher Appreciation Day
Evil Librarian update…
Matt’s Birthday Party Pics
Mama Bear is about to eat a Librarian
None of THAT!
Happy Birthday Matt-man
too much stuff!
Being Mean Pays Off
Matty’s dentist appointment
Mad Angry!
Survey
Not Friends
Grounded!
Do you Pogo?
WTG Lauren!!
What Would U Like 2 C?
It’s My Blogoversary!!
13-yr old for rent…
Trying to Find a Diagnosis
Rachel’s Appointment
Another One Bites the Dust
Wordless Wednesday
Wicked Stepmother
Crash and Burn
Little Better
this could be bad…
Depression?
R.I.P. Sunset
Wish
Deadbeat Dad Free to any Home
Guess what I can do…
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
The Verdict
Trip to the Doc
Baby Obsession
Welcome to the World Edward Thomas
Fragile X News Articles
You Are What You Eat
Just Imagine…
Adults with Fragile X
Austin’s EEG & X-Ray’s
Is Something Not Right or is it New Mom Jitters??
1 word to describe each day of my week
Wordless Wednesday ~ Creativity is Shot
April Fools Day Fun ~ Answers
April Fools Day Fun
Coming Together
…and these are the days of our lives
Autism Awareness 2008
Jake’s Run
Busy Thursday
The First 6 Months with Matt
Wordless Wednesday ~ Sleepy Time
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The IEP
Happy Easter
Find it!
Memoir Tag
Wrap-up of the Day
Hola Fellow Bloggers
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I’m Free
Article on Maureen Lang
Field Trip to the Animal Shelter
Invisible?
A New Chore
Inside our Walls
Bringing Home Baby ~ The 1st Month
Wordless Wednesday ~ Hiding or Self-Stimulation?
What to Write!?
Crush My Heart
It’s a Monday Morning
Spring Ahead
Trusera
Advocacy Action Alert
A List of Updates
In the Hospital with Matt
Toothbrush Update
Wordless Wednesday ~ Whatcha Studyin Momma?
Matthew’s New Toothbrush
Inclusive PE
WTG Austin
“Mean Girls” in Real Life
Good Find :)
Dinner
Matt’s Ultrasound Memory
Soccer Solution
Wordless Wednesday – Winter 08
Special Brother
Please Support a Fellow Blogger
NO pain!
Oops I Did it Again…
“A friend loveth at all times” ~Proverbs 17:17
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
Conferences for the “little kids” ~ Part Deux Matty
Conferences for the “little kids”
Good Valentines Day
Outraged!!
Blogger Awards for Vday
What!!!!
Wordless Wednesday ~ Bored Chef Series Part 4 of 4
no luv scenes
Great Teens
Fragile X Webring
Shower, etc
Sicky Boy
Where’s My Bracelet??
You Guys Rock!
Home
I’m Off
Favorite Posts Meme
Snow Day & A New Surgery Time
Gimme that Groundhog
Let’s Meet Hunter … and his mom
Presurgery post
Noodles not love
Wordless Wednesday ~ Bored Chef Series Part 3 of 4
Casualties of Snow
Blizzard of ‘08
Toilet Training Idea
Musical bedrooms
Saying Sorry
Another Snow Day
Wordless Wednesday ~ Bored Chef Series Part 2 of 4
R.I.P.
Day Off
Taggage
We are so proud
Hallelujah!
sssshhhh….
New Family Blog
The Ring
Wordless Wednesday ~ Bored Chef Series Part 1 of 4
Prayers
Happy Birthday My Baby
The Last Major Shopping Holiday…
Catch-22
Some toons for the day
Suffer?
Gotta Date
A Candy House
Wordless Wednesday ~ Jan 10
Dump
Treat it like it’s not..
Insane Weather
Just Be Open & Honest
Home Alone
Soo….
D-Day
Awesome Inventions in Taco Land
Conversations
Wordless Wednesday ~ Jan 2
Happy New Year!!!
Happy Birthday Dad!
Pondering
Anyone else??
Ruh-row
Winter Break
New Page
Advocacy Update
After Christmas Blah
Wordless Wednesday ~ Dec 26
Happy Birthday Jesus
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:
Wordless Wednesday
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)
I've been encountered on Family blogs For more information: People with a FXS link: Watch
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what you've been saying
1.
erika | January 16, 2009 at 11:26 am
SEXY! =)
2.
Bethany | January 19, 2009 at 8:31 am
I have mixed feelings about this video. At times I am fearful of what the future holds for my children, other times I am optimistic. If or when my boys need the assistance of a group home I hope that we find one as loving as the one in the video.
3.
KJ | July 13, 2009 at 9:43 pm
We adopted three boys with various forms of autism and appreciate those who would blog on such an important subject. People more than ever need to be informed about autism and what life is like for those so affected since this debilitating condition seems to be on the rise.