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Saturday, January 30, 2010

Leave a Message After the Beep

Saturday, January 30, 2010

12:00 p.m - Phone rings
"Hello?'
"Hi.  Did you just call me?"
"No, Mom"
"Oh.  Well it says I missed a call.  It says unknown number."
"Mom, I'm not an unknown number."
"Okay, bye."

12:05 p.m. - Phone rings
"Hello?"
"Hi.  It's me again.  I will pick Superman up from Polish school."
"Thanks mom."
"Also, please go outside to breathe the fresh air."
"Okay."
"And is your babcia doing okay?"
"She's fine."
"It's so nice outside.  Go outside.  Get fresh air."
"Okay mom."
"Call Mike.  Tell him I pick up Superman. Tell him to eat next time he donates the blood.  He will feel better."
"Okay mom."
"This air is so fresh today!"
"BYE MOM."

12:15 p.m.
"Honey, my mom is picking up Superman from Polish school.  Can you call her to say thanks?"
"Sure."

12:15:45 p.m.
"I tried calling and the phone went to voicemail."
"No problem.  I'm sure she'll call back at some point."

12:15:48 p.m. -Phone rings
"Hello?"
"Hi Mike, it's Dad, did you need something?"
"No.  You called me."
"Right.  Have you talked to Mom?"
"Just tried to call her and now she's calling me on the other line."
"Did you notice how fresh the air is today?  So Fresh!  Hold on.  Mom's calling on the other line."
"Mike?"
"Yes?"
"Why were you calling Mom?"
"To thank her for picking Superman up from school"
"Okay.  I will tell her."
"Thanks."
"Oh.  And Mike...."
"Yep?"
"Maybe some fresh air would do you all some good."

12:17 p.m. - Phone Rings
"HELLO?"
"Hi Mike.  It's Mom.  Did you call me?"
"Y. E. S.  Just wanted to say thanks for picking Superman up from school."
"No problem.  Go rest.  Get some fresh air.  And call me if you need anything."

12:18 - Phone Rings
"Hello.  No one is available to take your call.  Please leave a message after the beep."
BEEEEEEEEEEEP
"Hi everyone.  It's mom.  I 'm so glad that you're finally enjoying the fresh air.  Don't worry about calling me back.  I'll just try your cell phone."



Friday, January 29, 2010

Modify This

I am sitting across from a pretty little thing, hair pulled back behind her ears, a stack of papers in front of her, large solitaire diamond ring on her left hand. 
She is alternating between praising my "adorable" son (I can't say I disagree) and going over proposed goals for the new year.

I wait until she is finished to ask if there is anything we could be doing at home to facilitate his Occupational Therapy program.

She tells me to buy bigger legos.
Lighter playground balls.
Specialized scissors.
"Think modified" she says.

I do.

I think about the fridge door that has to be bolted shut because monchichi thinks muenster cheese slices are appropriate couch accessories.

I think about the safety-locked bathroom and cupboard doors beacause my Trader Joe's Peanut Sauce kept making it's way into the bathtub and cooking dinner with the mystery cans was becoming the culinary version of russian roulette.

I think about the youtube video on repeat, a daily ritual to help get the anti-seizure meds down his uncooperative throat.

I think about the giant orange construction fence used to block the driveway on lazy summer afternoons.

I think about the pre-cooked bags of noodles in the fridge, waiting to be doused in melted butter, because the bags under his eyes are finally fading and he might have actually gained a pound or two this month.

I think about the coaxing, the hand holding, the 853 times we've had to sing Happy Birthday in the past six months.

I think about missed playdates and midnight pharmacy runs, paranoid calls to the doctor and therapist-supervised community outings. 

I think about how someone else might look at our life and wonder what the hell is going on and that it makes no sense and why aren't we pulling our hair out and drinking our breakfast on the rocks?

I think about not being able to get out of bed in the middle of the night to pee without feeling a tug on the perpetual umbilical cord and that maybe I could do without a toilet companion.

I think about how it's all we know and that our love is a force more powerful than fear or anger or resentment and that mystery can dinners aren't nearly as awful as they sound.



I look across the table
at this pretty little thing
as she smiles sweetly
obviously proud that she has given me this sage advice

"Honey," I say, smiling sweetly right back at her, "it's a modified Life."


 

Thursday, January 28, 2010

Going to an IEP Meeting is Like Getting a Root Canal. By Your Mechanic. In the Back of Your Car. Without Novocaine.

We've got it all wrong with the waterboarding.

You want to get terrorists to talk, get them to sit through a few IEP (that's Individualized Education Program for those of you missing out on these rambunctious little get togethers) meetings and they'll be admitting they invented trans fats.

Monchichi's is tomorrow. 
As in, C.R.A.P.

It's that time of year again, when I get to try, with the least amount of hysterics possible, to convince our local school district that my special needs son deserves having a few extra pennies invested towards his academic progress and overall well-being.  The district has their own opinion on this matter; mainly, he's got his own desk complete with a lopsided chair, and there's a flushing toilet down the hall.  So what more could I possibly expect from them?

How about putting aside that big fat bottom line for a moment, loosening that clearance rack tie, and remembering, for just one teeny tiny second, that a child is at stake here. 
Not just any child either.
My child. 

I'm not high maintenance. 
I don't ask for horseback therapy or private dolphin swimming sessions. 
Not because I don't believe they are helpful.  Hell, I get out of bed each morning because I choose hope instead of hoplessness.  I just don't think the school district should be footing the bill for a romp with flipper. 

But, I do have a problem with politics and head games.
As in, why the frack are you trying to take away speech therapy from a non-verbal child,
or
reduce physical therapy from a boy who comes home covered in bruises because he can't keep up on the playground and has the balance of a three-legged coffee table?

I don't believe in burning bridges.  For my son's sake I keep it civil.
I don't throw tantrums, I don't make threats.  I pray for guidance and I try to not hate the service coordinator before I've gotten to know her.  But, as the teachers and therapists throw around words like "goals" and "benchmarks" and "80% accuracy,"  it's hard not to look across the table and stare into her beady little eyes, and wonder what it must be like to crush the futures of innocent children for a living.  Does she deny our son what he so desperately needs and then laughs about it over kung pao chicken during lunch?

Listen.
I'm no fool.
Having Autism in America is infinately better then having it in say, Siberia.
And if you've been reading this blog as faithfully as you let on, then you also know that I practice gratitude as often as possible.  Even when I'd much rather stick out my tongue, throw myself on the ground, and kick and scream my way to victory.  So I get it.  Yay America.  Yay running water.  Yay for not forcefully institutionalizing our beloved offspring (anymore).
Does that mean I have to settle for beady-eyed service coordinators? 
Maybe. 
But I don't have to settle for what she says is good enough for my son.
And tomorrow, when I sit among a roomful of people claiming to know what's best for him,
I'm going to make sure everyone understands
that the only person who's qualified to make such a pompous claim

is me.







Thursday, January 21, 2010

Decoding the Non-Verbal Child: A Guide for Parents and Loved Ones

I love to talk.
Let me rephrase that.
I love to hear myself talk.  And I'm pretty damn good at it.  In fact, when coupled with what some may refer to as dangerous hand gestures, I am a communicating badass. 

I once had a group of friends bet that I couldn't talk while sitting on my hands.  I took that bet, and promptly lost.  Apparently, talking with my hands was just as important, if not more so, than talking with my mouth.  My voice and my limbs worked hand in hand to relay important messages such as "I can't believe Sue kissed Bobby at Billy's party. What a slut!" or "Dude, I nailed that last keg stand." 

Ever the great communicator, (and obviously eloquent as hell) it has been a mild inconvenience to parent a non-verbal child.    I use the world mild only because this blog is not equipped to handle the kind of language that comes to mind when I discuss this particular issue.  So whenever you see the word mild, imagine it is preceded by       #@%##ing.  See if that helps to drive the point home.  Mildly.

I have quite a bit of experience now under my belt, with non-verbal communication.  And I feel obligagted to share my knowledge with you because I came up with what I think is a catchy post title and knew I had to follow it up with an actual post.  You are very spoiled and demanding readers that way.

So below are some basic non-verbal cues followed by their definitions.  Try some at your next dinner party to test personal boundaries and thin out that evite roster for your next event.

Hand Flapping:  Severe excitement.  Or overexposure to documentaries about migrating birds and/or windmills.  Either way, make sure you keep a safe distance.  I've seen speeds reach up to 55 F.P.M.  (Flaps Per Minute)

Head Banging:  Not to Metallica.  Like against a wall or other skull fracturing surface.  Usually indicates slight
annoyance.  As in, "I can't believe we're having chicken for dinner again, when clearly I prefer glazed ham."

Hair Pulling:  Not his.  Mine.  Typically translates to "Hey dingbat, it's 6:01 a.m. on a Saturday.  What do you think this is, the Hilton?  Get up and make me some breakfast bitch."

Intense tapping:  Commonly used to indicate that what he lacks in vocabulary, he makes up in doing something over and over and over again until you're not sure but you might possibly prefer to be skinned alive by red ants while drinking someone else's snot.

Bright, Beautiful, Heart-Wrenching Grin:  A daily maneuver to remind me that no matter how frustrated I may get, I'm gonna love almost every arm-flapping-body-tapping-hair-pulling moment I spend with him.  An underhanded move that melts my heart each time the stinker uses it.

Because dammit (insert head banging)
he's right.



Wednesday, January 13, 2010

Thank Heaven For Little Boys

A little bit nostalgia
a little bit pms
I stare at my son's latest artwork
crookedly hanging above my bedframe
and cry a cry usually reserved for
job loss
food poisoning
bad haircuts
the crooked two-wheeled truck
with an American Flag paint job
the kind of picture a mom
would confidantly pit against
Van Gogh or Renoir
I think about his two front teeth
so loose and crooked I want to yank them out in his sleep (but I won't)
His dresser stuffed
with
belly shirts
and
flood pants
Now a full two inches taller than his older brother
his new recess game includes barking like a hyper dog (he's so good at it)
he can't stand tags on his shirts
and says things like
Rockin
and
Gnarly
He went to the rolling rink with a friend last night for the first time
only to come home twenty minutes later
"I Want My Mom."
I step on legos
and curse in Polish (it sounds so much better that way)
and sometimes I wish maybe
he wouldn't interrupt quite so much
but
i know time is fleeting
and he will not always hug me
in front of his friends
his goofiness replaced by
the kind of awkwardness
that puberty brings
his crooked loose teeth
replaced with orthodontic hardware
his morning Spongebob marathon
replaced with long showers and too much cologne
and as I sit here and listen to him
pressing the button on his latest Happy Meal toy
I bite my tongue to keep from screaming and smile at him instead
because I know that in what will seem like mere seconds
He will probably stash
Playboys under his bed
instead of
lightsabers
and
mismatched mittens

Thank Heaven for Little Boys

God Help Me
with the other "milestones"








Thursday, January 7, 2010

Adaptive Doesn't Have to Mean Butt Ugly

Dude.

I was just surfing the internet, trying to gather some information on adaptive bicycles (which by the way cost about the equivalent of a suburban mortgage payment) and other such equipment, and it has come to my attention that there is a very real and very hideous movement going on.

What the hell is this?
http://www.adaptivemall.com/specneedtric.html

Englarge the photo.
What do you see?
Nope.  Not the bike.
 
The MULLET.

Why does the neurotypical friend/sibling have a decent haircut and a fashion-forward t-shirt depicting characters from a favorite Disney Pixar film?

Why is the boy on the adaptive bike sporting a mullet and a tie dyed monstrisity reminiscent of a bad trip?

Who is the marketing crackhead that approved this photo?

Here's another.
http://www.especialneeds.com/home.php

Wait about ten seconds. 
The image will flash on your screen.
Three children with special needs with really bad haircuts.

I don't know.  To me, special needs kids are just as deserving of a decent hairstyle as the next kid.  Especially if you're going to be on an advertisment.  When was the last time Walmart had models with mullets?  I mean, even Walmart  (which, let's be honest, is a total Mullet Magnet) knows better than that.

Now, I know there's always a flipside.  Of course I don't think we should use perfectly poised neurotypical children modeling chew rings in their  mouths or flashing dazzling smiles as they're photographed  being strapped into a cocoon-like hammock designed for meltdowns.  There is nothing shameful about the very real and very unique needs of our amazing children and they ought to always represent our diverse community honestly and relevently in print and television ads.

But  what does that have to do with each person's God-given right to a fair and equal haircut?

I say Enough!
Bring on the buzzers!
Bust out the shears!
Put the bowl back in the kitchen cupboard and quit using it as a cutting template!

I'm so irked, I may not finish my rice noodles tonight.
Carbs.
I am turning down carbs people.

Now you know I'm pissed.



*Please.  Before you get all huffy and politically correct on my @ss, remember
a.  I'm a mom of a special needs kid
b.  He has a great haircut
c.  This is MY blog, so neener, neener, neener,
d.  I am right.  You are not.
e.  The title of the post is not referring to our kids, dummy.  It's a call to action on their behalf.  DUH.

Sunday, January 3, 2010

But Wait! There's More!

Superman has discovered Informercials. 
In other words, Dammit.
Instead of getting up when his favorite show is being interrupted by the latest plea to purchase some oddball invention, he sits in front of the television, mesmerized by the possibilities being presented by someone who always sounds as if his Immodium has worn off and he's on the verge of a major bathroom faux pas.

"Call Now!
 Don't wait!
"Pick up the phone and order Today."
"Right now. In the next two minutes!"
"Do it before I poop in my pants!"

The urgency is not lost on my son.

"Mom!  Hurry and write this number down.  It's a toothpaste holder and there's NO mess and it gives you the PERFECT amount of toothpaste everytime!!" 

"Hey mom. I think I feel a draft. We must get the Twin Draft Guard. It's simple to install! It never needs adjusting! It has an airtight seal! Do you realize the amount of money you could be saving on your heating and cooling needs?"

"Mommy!!!!  Quick!  Look!  We have to order the hover disk now before they run out!  Oh My Gosh, we have to order in the next FOUR minutes or the police will come to our house and take us away to jail!"

"I don't know how we've survived so long without the Mr. Steamy!  It's like we're living in the dark ages.  I've been meaning to tell you that my clothes are unsightly due to persistant wrinkles.  Clearly I cannot possibly be expected to go back to school until you resolve this mess by purchasing the Mr. Steamy right now, using your Visa or Mastercard, for only $19.99 plus shipping and handling which also includes your free gift, a glow in the dark denture box!"

After comingthisclose to convincing me that we need the Mr. Steamy or our lives will be forever unmanageable, the next step is quite clear.

He's going into sales.

I'm on the phone ordering the No Workout Ab Flexor Meal Maker Dust Blaster Poop Wiper 2000.

What?

There's only three minutes left.