Monday, March 07, 2011

Your Child Might Have Fragile X If.....

This was a forum I started in My Fragile X Community in December of 2009, and it took off and developed a life of its own.  Dozens of people added their thoughts and interpretations of what their FX children do that says "that's FX!"  It has been resurfacing every once in awhile for over a year now.  Here are a couple I started it off with:

"He has an uncontrollable urge to lick glass. Windows, mirrors, aquariums...and being in public does not reduce that urge!"

"You never go anywhere without some snacks, because eating is the only way to get your child to stop making all that noise."

Here's some of the other entries made.  I think it's a great list of typical Fragile X characteristics!

"Hand flapping....definitely!"

"I often wonder if I attached wings if Jake could fly!"

"How about chewing on clothing, my son ruins every shirt he has!"

"Chewing ice...this is new, he has only been doing this for a few months now."

"Everything you look at, you ask yourself "Does this have good "wave" quality?" "

"LOL, ours is "will it spin?" " "Logan likes things that make a certain wave when he wiggles it up and down! Also, I never leave home without a bag of fruit snacks and an extra string in my purse....yep, thats Fragile X!!"

 "You have watched the same 5 five minutes of any video a thousand times without actually seeing the entire video."

"Jack's never seen a toilet that doesn't need flushing!. (at least once!)"

"Has the cleanest bedroom in the house as anything he doesn't want in his room gets thrown down cellar"

"Walks around the house in boxer shorts and a blanket held over his head"

"Knows how to find every YouTube video in portugese, and laughs hysterically while watching them over and over"

"Won't eat his pop tarts in the morning unless they are on a specific dish, and always breaks off the upper right corner and its standing up before sitting down at the table"

"your 5 year old can't tell you "Happy Mother's Day", but he CAN finally say "mom" and that is even better!"

"You've ever had to apologize to a stranger in Walmart because your child liked the texture of their shirt (or pants, or hair, or any item in their shopping cart) :) "

"they've ever turned on all the lights, stood over your bed, peeled your eyelids open at 4am and said "Hi You! Juice! Play! Up, No sleep. All done." stolen your covers, pulled your legs over the side of the bed, and demanded cheetos. "

"if your home decor includes one or more yoga balls."

"if you have alarms in your home to let you know when people are going out rather than coming in :)"

 "Your child might have Fragile X if you can name every gluten-free item on every menu in every restaurant chain." 

"if your child cannot spell or say his name but can use the dvd player, remote control or pc better than you."

"if you still use a stroller at almost 4"

"wear the same pair of Converse high tops everyday because they are the only shoe he can't get off in 2 seconds flat"

"know the loudest places to eat (if you dare)"

"are always stocked up on snacks"

"both of their hands are always carrying something"

"don't ever get to sit down at a party/family function for fear they will throw something in someone's drink, also arrive late and leave early to everything"

"no matter if the ocean is 40 degrees, he is going in and dragging you with him"

"he starts to growl under his breath like a sixth sense, he knows he will not like where you are taking him, hint, he is right. He will not like the place and you will leave. It takes one time to realize this."

"he can't say one little word, but can laugh until he snorts at the same Spongebob cartoon in the exact same spot like it is his first time watching it"

"even though he can't talk or read, he knows when you call the wrong Thomas character and will keep pointing at it until you call it by the right name."

"You buy french fries, chicken nuggets, Goldfish crackers, bananas and grapes at Costco because they are the mainstays of your child's diet"

"You are starting to wonder about your impact on the local landfill from all the juice boxes you go through!"

"You dread a trip to the dentist with your child more than you do for yourself...and I'm talking even a root canal!"

"If you have to stop singing "Happy Birthday" at his two-year party with family because he is so incredibly overstimulated from people and noise that he starts screaming, hitting himself and just plain freaking out."

"And decide it would be better to schedule 30 minute rotating intervals for family to stop in visit, give a present, have cake and leave for the next person."

"Kolton can be playing in the opposite end of our house, but if I open the microwave, he is right there wanting to know whats going in!! Same goes when I start my blow dryer!!!"

"I carry anything that can flip, roll, spin or edible whenever we leave the house:) And forget walking thru a parking lot, we have to stop and touch every wheel/tire on every car we pass. In Wal Mart, I cannot go NEAR the bicycle isle, unless I have time to let him touch all the wheels there too:)"

"And he can hide all of his pacifers and I mean ALL of them, then at bedtime when you and every other member of your family has searched the whole house over 2 times, the little squirt is sitting in the bed with a paci in his mouth. Like, where did that come from?"

"I had taken my son, Tom in for blood work one day (which is really traumatizing for him). It took a staff of 4 people to keep him in a calm hold. As the technician was going to draw blood, Tom said "Lets all pray", and everyone so focused on trying to keep him calmed down said nothing except for Tom, he said "Lord, please have mercy on me!" They drew the blood and everyone was relieved. I then left the clinic with Tom remembering what he had said. I broke into laughter, thinking exactly of what was said. My son never seizes to amaze me in whether it is something that he says or something that he understands. Tom, you are the greatest!!!"

"I unpackaged my new flat screen tv, and my son 5, walked up to it, looked it up and down and sluurppppp licked it. I got the box out and packed it back up till I could get it mounted on the wall!!! LOL"

"The things he says make no sense but somehow seem to fit and become family sayings. --
"that is so Uberdeconstructional!"
"You can't blame a girl if you can't see one"
"Some day's you just never know"
and my favorite...
Goin' to heaven...that makes for a long day"

"When the teacher tells your child, before walking to the cafeteria, no hopping no jumping no skipping no flapping."

"When he sees a latino person and you have to quickly remind him not to start speaking his version of spanish."

"When you think he's going to bust out your window on the passenger side where he is sitting in the car while having a meltdown only to ask what's for dinner 30 seconds later!!"

"Logan has to wear he socks inside out. He is also obsessed about stop lights. Driving down the road all of the sudden he will yell "red mom" or "green mom go". I love it!"

"if he can't get enough of crunch. (Top Ramen, Popcorn, Chips)"

"if he lives in his underwear (with no clothes over top)"

"if he has several different blankets made of either smooth, furry or slippery fabric"

"if he can't get enough of pranks"

"if he keeps his stuff "just the way he likes it""

"If you plan every outing around destinations that have elevators."

I love these.  Every single one makes me smile.  If you haven't been to My Fragile X Community before, you should definitely head out there and check it out.  It's a great place to connect with Fragile X families.

Freshly bathed.

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