Friday, January 11, 2013

Fragile X Writers Series: Fragile X Parents - We Got Skills!

Oh, boy.  Get ready.  Because this week's guest writer, Melissa Welin of Basically FX, holds nothing back!  I am in love with her take on how we, as parents of children with special needs, are completely prepared for whatever challenges a doomsday might bring.  Talk about seeing the silver lining!  I wish I'd written this, it is SO funny, but I get to do the next best thing - to post it for your reading pleasure.
 


Bonnie asked me to contribute to the Fragile X Writers series and I was so excited.  But I've been reading all the amazing contributions, and gotten progressively less so.  I was feeling the pressure to come up with something touching, inspirational, heartwarming or educational and fuh-reaking the fuck out!  Then I remembered...Bonnie knows me, she isn't expecting any of that!  Phew!  Now that the pressure is off I can finish this up and stop wrecking her editorial timeline.

Anyway, I have a topic that has been floating around in my brain for a while.  Have you seen the show "Doomsday Preppers" on NatGeo?  I'm a little obsessed with it.  The premise is that they follow these [nut jobs] well-prepared citizens as they demonstrate the steps they've taken to prepare for a worldwide "Doomsday."  They all have a different idea as to what will finally tip us over the brink but they are all convinced that we're going over.  So cheerful!

Intially I watched the show and thought, "Holy shit, we are SO going to die."  Seriously, these people devote hours and hours every day to "prepping" and here I am munching on popcorn while I watch them run around getting ready to survive the end of civilization as we know it.  Then I thought, "Meh, I need more popcorn."

After giving it some thought I realized that as parents of a child with Fragile X, we have more than enough training to kick some doomsday ass.  Really, for the last 6 years, 9 months, 1 week and a handful of days Eric and I have been in survival training 24/7, right?  Let's explore.

There are a few major areas that "Preppers" worry about...

Food & Water
Shelter
Security
The Unexpected (NatGeo refers to it as the "X factor" pretty funny, eh?)

Food & Water

We have learned through painful experience over the years to not ever, ever, under pains of running snot and melting down, run out of either snacks or drinks.  I can pack a purse with enough snacks and liquids to last for a day, give me a backpack and we are good for a week.  AND we are like squirrels, we have stashes of drinks and food all over the place.  Caleb is a tremendous help here.  Lift a pillow off the couch?  Cup of juice!  In the cabinet holding the entertainment components?  Hopefully it's a cup of water this time and not milk, that sucked.  Lift Caleb's laptop off his desk?  Chips!  Under the couch?  Cheerios!  I'm pretty sure we could feed a family of four for a year on the goldfish crackers hiding in the truck.

Shelter (This is a two-parter, you need to be able to hole up in your house *and* you need a bug out location)

One winter a few years back we stayed in the house so much that when spring rolled around Caleb cried EVERY TIME we tried to leave the house.  We can do months holed up, piece of cake.  In fact, it's sort of the preferred state for me too...there isn't much trouble with social anxiety when you play hermit!

For a bug out location...well, first, let's start with the fact that we can evacuate any place, any time.  I have left my parents' house so fast on occasion that I'm pretty sure we broke the sound barrier.  If having a child with Fragile X has taught me anything it is this, be prepared to GTFO.  Always.

As to where we can go?  Caleb has a few preferred locations and he keeps us constantly informed where those place are.  On the way to school?  He reminds us we could always go to Grammy's house!  Heading out for a day of running errands?  He never fails to let us know that Holly's house would be much preferred.  And if we are ever in doubt about how to get to either...he knows exactly which lefts, rights and exits will take us to Grammy's house (with a stop at Sonic for chicken, of course) and though Holly's house seems like it might be a little trickier, given the multiple states between us, he can get us there with one word (heard over and over and over and over these days) - "Southwest."

Security

Weaponry -- We don't do guns.  I mean we have Nerf but they don't even sting, plus we're not actually ALLOWED to fire it under pains of running snot and melting down.  The darts MUST stay loaded in the gun JUST SO at all times.  FYI, "JUST SO" is the way I loaded it when it came out of the package.  Caleb has been known to take people down with a well-aimed football or basketball to the back of the head though, so I feel pretty secure in this area.

Special training --We are parents, that's enough, isn't it?  It means we have eyes in the back of our heads and we can sniff out the difference between just passing gas and holy cwap we need to find a bathroom NOWNOWNOW.  Our well-honed senses mean there is no sneaking up on (or away from) us.  We have a child who lacks "impulse control" which means we have mad search and recover skills.  We can stop a speeding child with a grab of the collar, I don't even have to look anymore.  We can easily carry 70 lbs of "limp noodle" which is the equivalent to dead lifting approximately 800 lbs.


Cerberus


Security enhancements -- We have a motion sensor that flashes our bedroom lights as soon as anyone over 2 feet tall walks into the hallway.  Our sleep is so light at this point that a flashing light has us up and yelling "GET BACK IN BED NOW!" within seconds.  If I look anything like I feel at that hour, I'm guessing I can swing a pretty mean Cerberus impersonation.  Oh, also, we have that little shit of a dog who barks at his own damn farts.  No one is sneaking into, or out of, this house.

And now we get to my favorite...

The "X factor"

How do I do in a medical emergency? Broken teeth, blood draws, x-rayed extremities...please, this is just too easy. NEXT!

Communication -- After over 4 1/2 years of silence we perfected non-verbal communication.  I can tell my darling boy to STOP IT with a slash of my hand and a glare...and he listens.  We also have enough ASL skills to solve any snack or bathroom emergency from across the room.  I can also beg my husband to please, please let's go...my head is killing me.

Other skills -- They mention bartering, that's pretty much like bargaining right?  I am the queen of bargaining, "Just please, please, please stop and I will give you ANYTHING!"  "If you don't walk through that door right this second I swear I will..."  Ahem.  That's sure to be useful.

If just being a bossy and not-so-patient mom isn't effective, I'm pretty sure I have enough "on the job" experience to barter services like PT, OT, ST, potty training or educational/general developmental advice.

So, go ahead, bring on doomsday.  It's nothing we haven't dealt with already!  Anyone else want some popcorn?

1 comment:

Angie said...

GTFO of here! Laughed out loud at that one. All you wrote is true in the Joshman's house! We are so freakin prepared it's pathetic. Love you and love your funny, yet serious spin on our crazy journey with the X Factor!

Related Posts with Thumbnails

Labels

#youmightbeanautismparentif 2012 in review 9/11 memories ABA therapy Acceptance acronyms advocacy affection aggression AJ Aliza Aliza the playwright All I really need to know... Alphabitty Moments American Girl Ann Coulter antibullying anxiety anxiety in parents of children with special needs apple orchard apps for autism AppSmitten Arbaclofen Arbitrary Thoughts ARC autism autism brushing autism portrayed in TV shows Autism Shines awareness backyard band baseball bath toys beds behavior problems being tall Birthday Boys biting blog change blog hop blogging books bottles brushing bubbles Burnsville Fire Muster bus Cabin Fever in Minnesota candy Carly Fleischmann Carly's Voice cats cats and dogs chewys Chicago childcare for special needs children childhood Children's Museum chocolate Christmas Church circumin clinical trials Clonidine CNN Hero of 2011 coffee communication comparisons computer Conference cost of special education Courage Center Curcumin daddy dance dance competition dance moms Dental surgery dentist developmental milestones diagnosis diapers Diego Disability Day dogs Dolphin Tale Doomsday Preparation Dora Doritos drug trials DVD player early intervention earrings Easter ECSE Parent Retreat electronic gadgets electronics Everything I need to know... Evil Overlord fall falling asleep at school families family fashion fear Featured Feel Good Friday field trip fireworks first day of school Flash Gordon Food Chronicles food issues in Fragile X and autistic children forms forts Fragile Face of God Fragile X Fragile X advocate Fragile X and autism Fragile X Awareness Day Fragile X carriers Fragile X in the news Fragile X presentation Fragile X statistics Fragile X Writers friends fundraiser for Fragile X funniest Funny Gabrielle Giffords Galveston games getting carsick Girls' Night Out Giving Spirit glasses global warming going home Good Morning Great Quotes guest blogs guest post haircuts Halloween hearing test Heaven is for Real hippotherapy holidays Holland Holly home life homework hotel hugging human behavior hyperactivity IEP Meeting IEPs in the news inclusion inspiration integration iPad iPad apps iPad apps for autism IQ testing Jack Jablonski January First Joke journal entry kids with Fragile X and animals Kindergarten Kindle kisses language study learning to talk leaves lemonade stand Lily Little Einsteins losing teeth Mad Gab makeup mall Mall of America marcia braden McDonalds media sensationalization medications Melatonin Miami MIND Institute Minnesota Bloggers Conference minocycline Miracle League monkeys mosquito bites Mother's Day movies MVMOM Used Clothing and Equipment Sale nail trimming names naughtiness neighbors nicknames nightmares normal off topic one thing leads to another online dating Operation Beautiful oral sensory orphan drug act other bloggers Our Wedding outside overstimulation panic attacks parade parental stress Parenthood park Partners in Policymaking penicillin people with disabilities pets pharmacy fun photography Photoshop picnic Pictures pinching pink shirt Pinterest playing outside playing with toys poem politics poop potty training Presents protecting autistic children rash reading to kids research Retreat riding a bike Robin Williams Roger Ebert routine RSS feed RUSH University San Diego Sandy Hook Elementary Santa schedules school school bus school notes school pictures screaming self image self-checkouts sensory Seroquel siblings with developmental delays sick kids sippy cups sleep smile snow pictures Snowstorm social situations speaking of the unspeakable special education special education evaluation special needs kids special needs parents Special Needs Ryan Gosling Special Olympics spelling spoon feeding spring break staying positive stimming Strep STX209 Stylish Blog Award suicide summer Sunday School Sundays sunshine survival mode swimming talking talking to kindergarteners Target teacher's aides Teeth brushing Tegretol Temple Grandin Ten Commandments textbook case of Fragile X thankful thanksgiving that window/mirror thing The Autism Store The R Word the rapid passage of time The Right Things to say to parents of special needs children The Santa Experience the Shedd Aquarium The Twin Thing The Wiggles therapeutic horseback riding therapy This is Autism topless trampoline traveling with special needs children TV twins with special needs Twitter typical Fragile X characteristics typical kids typing vacation Vacation Bible School video games videos volunteering Waisman Center water play way-back-Wednesday What I've Learned What's your song? when a special needs parent dies Wiggles Wii games Winner Winner Chicken Dinner winter wonder Wonder Pets Wordful Wednesday Wordless Wednesday Words of Wisdom World Autism Awareness Day YMCA You Tube Zack Zoloft zoo animals

Fragile X Blogs