Anything But Ordinary…

People tend to talk about things they know nothing about as if they do.

They say they couldn’t do certain things as if they would have a choice.

They make martyrs out of people of inconsequence, and remain willingly blind to the things that matter.

I am one of those people.  I’ve been that person.  I’ve been you.  On the ‘grand’ scale, we all have.  We are all guilty of believing ourselves to be both more and less significant than we are.  Dramatic, earth-shattering moments in our lives that mean nothing to others.  Touched, but unaffected by the earth-shattering moments of others.  Engagements and divorces; births and deaths.  They touch us, but they don’t.  Until they are ours.

We all have a sentence in our head that sticks around forever.  A pinnacle moment when someone said something and it stayed with us for the rest of our lives.  “I’m pregnant.”  “I want a divorce.”  “Your son has autism.”

That last one – that’s me.  That’s mine.  The worst part?  Those words weren’t even uttered to me.  I’ve delivered that news to the majority of the people in our lives– but I missed the moment that they were supposed to be spoken to me.  Because I was sitting in a hospital room with a six pound miracle who needed his mommy.  And the idea that I could have pushed a little harder to make that meeting – but I didn’t… it’s like acid.  Because now there were two, and I knew the news.  I knew the words even though I hadn’t heard them spoken.  My presence wouldn’t change that.  But he needed me.  They both did.  How do you split that need?  How do you divide that time?  When they both need you most, where do you go?

You go everywhere.  You go to the IEP meeting for one, and follow it up with a trip to Early Steps for the other.  You go to particular playgrounds because you know they have that one thing that Thing One is fascinated by – the one that scares the pants off Thing Two – but they also have the one thing that Thing Two is fascinated by – and by the power vested in me by the state of motherhood, I now pronounce you both happy at the same time for a whole ten minutes.

I’ve heard so many times “I couldn’t do what you do”; it makes me want to scream.  Yes, you could.  You would.  You’d probably blow me out of the water.  Because you don’t choose this – it chooses you.  This miraculous, beautiful, painful life points a finger and says “You’re it”.  Sure, you could choose not to fight, you could deny, ignore, or wallow in self pity.  But what would be the point?  It is what it is – and what it is just happens to be your job to make the absolute most of.

Encouraging the quirks and oddities – while trying to teach a child who understands nothing of social convention how to be himself, and still accepted by our society.  Our harsh, judgmental, over-opinionated society.  How do you say to a five year old “You can dress up like a princess at home, but you can’t wear it to the store because people will laugh at you, other mothers will say mean things about you, and you’ll be deemed an outcast because people are rude, too quick to pass judgment, and don’t give second thoughts to picking on the innocent.”?

What it comes down to is feeling like a constant hypocrite.  “Be yourself, but don’t be too different or you won’t have friends.”

What kind of message is that to send to our children?  A crappy one.  And unfortunately, one that is completely true.  Kids are mean.  Adults are more so.  That mother with the a-typical child who is calmly walking with her as she does her grocery shopping doesn’t look at my children and think “autism”.  She thinks “bad mother.”

Because compared to her vanilla a-typical kid, mine are Funfetti cake with Pop Rocks frosting.

Thing One is singing at the top of his lungs while rocking his hot pink shoe laces, pushing his baby doll in his stroller.  Thing Two is sitting in the cart screaming gibberish, and flailing his arms madly at every single round object in the store.  I don’t even notice.  This is my normal.  And then Thing One trips on something, and his baby doll is sent flying.  Activate meltdown in 3…2…1…

And as I fix the baby doll, waiting for the waves of screaming to subside, I hear “He needs to be disciplined.”  “What he needs is a good ass-whooping”  “Some people just weren’t meant to be mothers.”

The list goes on.  After four years, it goes in one ear and out the other.  But it still pierces the heart, even if the ears are deaf to it.  We as a whole need to stop encouraging society to be so judgmental, so self-important and conformed.  If my kid wants to push around his baby doll in the little pink stroller – so what.  If he gets over stimulated and has a meltdown – walk away or offer encouragement.  I don’t need your pity, your shaming looks and snide remarks.  I have done more for my special needs children than you could ever imagine having to do with your perfectly developing child.  I don’t pretend to know about your problems, keep your thoughts on mine to yourself.

Parents of special needs kids have special needs too.  We feel guilty.  All the time.  About everything.  Is it my fault?  Is it something I did?  Am I doing enough?  Is this helping or hurting?

We question everything we do, everything everyone says.  Every doctor, specialist, book, blog, and peer.  We are more sensitive to our parenting abilities.  We are not made out of steel.  We are marshmallows inside aluminum shells.  We look tough, but we aren’t hard to pierce.  We spend our days working tirelessly while questioning relentlessly.  We spend our nights doubting ourselves, our abilities, our choices.  We lay awake scared, anxious, and worried.

When you see that mom – that frustrated mother, who is holding it together by sheer force of will, don’t be snarky.  Don’t make painful comments under your breath.  Offer a smile of understanding.  Offer a hand.  Just walk the hell away if you can’t manage that.  Special needs children are the most precious gift life has to offer.  And the parents who raise them are superheroes.  Each and every one of them.

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Paint it Black…

I nearly had a heart attack at 3 o’clock this afternoon.

I thought – no – I KNEW Poopcasso Jr had made a comeback.

It couldn’t be.  He stopped!  And then I remembered.  Poopcasso Sr had experienced a relapse as well.  Right around this age.  Oh.  My.  God.  It’s true.  Kaleb went a whole six months without smearing poop on every surface in his room (including himself).  And then BAM!  Just like that he was back.  Staining the walls, floors, bed, toys, self, windows… of course it had to happen when I was unsuspecting and pregnant with Poopcasso Jr -so – I ended up tossing my cookies at the smell alone.  I was sick two more times before I could get him in the shower.  Three times after that before back-up arrived to help clean the mess I couldn’t get within ten feet of.  That was a wretched day.

So, when I opened door to Mason’s room this afternoon to wake him up from his nap, and was assaulted with The Stench – my first thought was “Oh no”.  When I then took two steps into his room and saw the dark brown smears all over the bed, I thought “Oh no oh no oh no oh no oh NO

I’m horrified, and realize that I am sending up silent prayers that I am not seeing what my eyes say I’m seeing.  “Poopcasso Jr was banished.  He was gone.  This was done with.  I refuse to accept this reality.  Give me a different one.”

And then I got right up to the bed and thought “What the hell??  Is that… cake??  Oh my God it is cake.  Cupcake.  The cupcakes!”

I experimented last night with a recipe for chocolate pudding filled cupcakes.  They were terrible.  I cannot bake cupcakes.  Pies and cookies?  I will kick butt.  Cupcakes?  Nope.  They are horrible every time.  Last night was not the exception.  The boys seemed to like them though.

Evidently, before I put Mason down for his nap, he managed to get his pudgy fingers on a cupcake, and stashed it somewhere in his room.  So, after I put him down for a nap, he must have ripped into it.  Thus creating the Poopcasso Jr illusion.  And, he really did poop.  In case you were wondering.  But he left it in his diaper.  Poopcasso Jr is still in retirement.  Thankfully.

Demon Days

My two year old is seriously making me consider contacting an exorcist.  Where did this Linda Blaire impression come from?  Is your head actually spinning around on your shoulders, or are you just shaking it back and forth that fast?  That sounds demonic.  What is that sound??  Holy crap, is that coming from you???  Why are you shrieking like that – better yet, how are you even making such a noise??  

This is what is running through my head as I stare at Mason having one seriously intense meltdown because his bagel will not stay together.  That’s right.  That’s what I said.  His bagel halves will not stay together.  This has caused nearly two hours of nearly paranormal activity.  The screaming (seriously, it sounds like there are two of you, and one of you is possessed – stop it it’s freaking me out!); the violent throwing of self onto tile floor (how have you not cracked or broken something yet?); the thrashing, wailing, lashing out, dizzying shaking of the head to and fro…

Holy cow child.  I forgot just how crazy meltdowns could be.  I’ve gotten so used to Kaleb going straight for the “give mommy a concussion or die trying” technique that I’ve completely pushed aside all thoughts of what it was like before he wanted to cause me physical harm.  And now I stand open mouthed, with a cup of coffee in one hand and a bagel in the other wondering how on earth I could forget such earth-shattering, ear-splitting, migrane makers.  It was probably survival.  My mind was probably trying to patch over the things that were no longer relevant in order to keep from imploding.  Fail.

He’s now sitting in my lap, sniffling, with a (sugar-free) Oreo in one hand and a cup of juice in the other, watching Sophia the First (they need to make new episodes.  Please.  If you’re going to insist on playing this show over and over again – and yeah, I get it, you’re proud of your new masterpiece – but please make more than the two episodes you’ve been shoving down my throat).  I’ve hid the bagel.  Not that it matters, I know as soon as he realizes I’ve put Kaleb’s gate in his doorway, and put his gate in the garage doorway it’s going to start back up.  He won’t care about the gate in his room – but as soon as it becomes apparent I have effectively locked him out of the garage world war six will start.

On the plus side, I didn’t get a phone call from Apocolypse Elementary yesterday telling me to come and pick up my demon spawn.  So far today I haven’t heard anything either.  Then again, the real worry window is the next hour and a half.  Here’s hoping he can go two days in a row without getting suspended!  I did get to speak with the special education lawyer yesterday though, so I feel better about going into the IEP meeting on Monday.  Now I’m going to heat up some soup and cook up some grilled cheese for me and the Mini Monster, before the next meltdown starts up.

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Those Lazy-Hazy-Crazy Days Of Summer…

School started for the day 7 minutes ago.  That is 7 minutes that I have been sitting here chewing on my lip staring at the phone.  Seriously?  Am I going to do this all day?  Am I going to spend the next 5 hours staring at this stupid phone?  Probably.

Well, I suppose that’s what happens when I haven’t been able to go three days without getting called by the school since Christmas break.

In the meantime, I am going to sit here and laugh at Mason, who is completely crazy.  Last night when I was getting to boys ready for bed I told Mase to go get his cup.  I stood in the hallway waiting, and waiting, and waiting.  After a few minutes he came running back into his room, and jumped into bed.  With a bowl filled with Shrimp Scampi – the remainder of his dinner.  I just stood there in shock, laughing as he sat in bed and tossed a handful of pasta in his mouth.  At least I managed to cook something he would actually eat!

Now he’s laying on the couch practicing his facial expressions.  It’s always kind of disconcerning to see him randomly smile, frown, scrunch eyebrows, raise eyebrows, twitch mouth… I can’t wait to stick this kid in a drama class.

I cannot seem to focus on anything today for more than thirty seconds at a time.  It’s really kind of crazy.  One minute I’m thinking about one thing, the next I’m doing something different.  The next thing I know I’ve stopped what I was doing and moved on to something else.  Kinda goes something like this:

Finish that post – check book for edits – check message boards about contest- oh, a new lesson today – start to read lesson – I should make breafast – is this really what I want for breakfast? – check email – oh don’t forget to change the timeline – oh crap that guy never called me back – what is that?  Laundry shoot – oh hello Mason, wanna play? – uh oh, mommy never finished that email – oh look here, I started a blog post…

I’ve been bouncing bouncing bouncing all over the place and back since 6am.  Which is just entirely unproductive.  I’ve got ten different things going at the same time right now, and I seriously keep forgetting about them.  Including this.  I started writing this at 8am.  It’s now 9:40.  I’m not going to get a single thing accomplished today, I just know it.

I wish it was nicer, we’d go to the beach.  Mason would eat sand, run off, try to swallow the ocean, try to make the ocean drown him… I would clean sand off his face, chase him, try to stop him from choking or drowning… then we’d go home, all sunny and sleepy, and oh so happy.  I’ve come to rely on the beach – it’s my favorite play thing.  Bored?  Lets go get sandy.  Hyper?  How bout I throw ya in the ocean?  The boys have always loved the beach – mostly.  Mason has a strange love/hate thing going with the sand.  He loves to play with it, but he hates that it’s on him.  Kaleb used to eat sand on purpose (much like Mason does now ), but he would flip out after we got out of the water when the sand stuck to him where he was wet (oh, you know, everywhere).

I’m excited for this summer, because Kaleb is old enough for me to take them both to the beach on my own without worrying about having to chase them both down.  Mostly.  I probably won’t brave it the first few times.  I’ll probably bribe someone to go with us.  It will most likely be someone who hates the beach, and I’ll have to plead and prod until they cave.

Then you see the kids, covered in sand, eating sand, having an amazing time, and you think, well, okay, the beach isn’t that bad.  Until you have to pack it all in, drag the circus of beach stuff back to the car, attempt to shower off and end up making it worse.  Then you hate the beach again and in two days I’ll have to beg borrow and steal to get you to load up with us again.

Totally worth it.  Now I’m really sad it’s too cold to go play in the sand.  Come on summer, wouldya hurry up already?  I’m waaaaaaaiting!  Oh well.  Mason seems to enjoy the mommy-is-crazy train.  Guess I might as well enjoy it too!!

 

Willful Suspension of Disbelief…

Could someone please, PLEASE explain to me how suspending a five-year old autistic child is a productive way to manage a difficult situation?

How is teaching my child that every time he misbehaves mommy comes to get him a good thing?

How is “Refusual to stand up” even grounds for suspension??

Or, how about this one:  “Insubordination, refusal to listen to adults, took off twice causing campus disruption”?  What do we think about that?

I will tell you what I think.  I think he’s a difficult, highly intelligent, stubborn, hard headed, smarty pants, and nobody wants to take the time to figure out how to work with him.  So, instead, they’re just sending him home with his little yellow suspension slip and saying “nothing we could do!”

My ass there is nothing you could do.  You could remove him from the situation when he starts to meltdown.  In other words:  when you see him clenching his fists and jaw; when his body goes rigid and/or tense; when his eyes start to flick from left to right at a high speed; when his voice becomes high-pitched, and he starts to squeak-squeal-whine; when the decibel of is voice begins to increase in pitch quickly… MOVE HIM.  Put him in his safe spot.  Keep him at least two arm lengths from the other children.  Speak to him slowly, calmly, quietly – like you would a three year old – because (I’ll say it again) – he has the cognitive thought process of a three year old!  Put him somewhere safe for him to lash out – a place where people won’t get hurt.  Make sure he is at the front of the line when walking to different buildings to ensure he will not get an opportunity to run into traffic.  Take the time, put the preventative measures in place, and holy cow wouldya look at that?!  progress!

Okay, I’m sincerely aggravated right now.  I’m probably coming off as an unsympathetic b*tch.  Which is okay, because I’m not really feeling all that sympathetic right now.  I’m feeling more like a volcano on the verge of eruption as it just so happens.  My child is autistic.  OH, and let’s not forget that “Suspected Undiagnosed Epilepsy” that the neurologist has been throwing around for two years – because everyone has SEEN him have a seizure, but they can’t get it on the EEG or MRI’s so we get to throw around vacant un-diagnosis’.  It seriously is like living in Wonderland.

I know that there are good people out there who are trying to help, who genuinely want to help, and I couldn’t be more grateful to them.  I could not begin to say just how incredibly comforting it is knowing that there are other people out there besides us who are fighting for our children.  But that does not change the fact that he’s being set up like a faulty set of bowling pins on a crooked lane.  I sent a note in to school this morning with his teacher.  Explaining that we went to the neurologist on Friday, we are adjusting his medication, and trying to get him in behavioral therapy.  We then did a sleep deprived EEG on Monday – basically forced him to run on little more than 4 hours of sleep all day, drove to Orlando, ran the test, drove home, where he didn’t go to bed until 9pm.  So, I gave fair warning that today would be difficult.  Didn’t matter.  He refused to stand up and go to Special Area.  He got suspended.  Again.  4 times in less than 6 weeks.  7th day total of suspension.  I’m losing my mind.

Now, we’re waiting to hear back from a Special Education attorney, IEP set for Monday, and I’m oh so la-de-freaking-da about the fact that my chances of not getting a phone call tomorrow are…. just shy of zilch.

Do you feel like you’re beating your head against concrete?  Because I feel like I’m beating my head against concrete.  Maybe that should just be my new thing.  What’s that saying about an unstoppable force meeting an immovable object?

Sleepwalker…

As I sit here watching t.v. with Kaleb at 11pm, I can’t help but wonder…

Am I the only one who thinks that Higglytown Heroes is a really strange show?  I mean, they’re like a town full of Russian Nesting Dolls who worship the most random people you could think of.  I appreciate the premise – I totally get the benefit of highlighting the positive qualities of jobs people often take advantage of or overlook.  But, do they have to make it so… labor intensive to watch?  Seriously.

Okay, you might have no idea what I’m talking about.  You could be a Nick Jr. family (like we used to be until the elimination of Moose A. Moose and my subsequent protest), or you could have grown-up kids, no kids, or you could be one of those rare species without cable.  Regardless, Higglytown Heroes is just downright weird.  Not Teletubbies weird, or Yo Gabba Gabba! weird, but strange nonetheless.

Kaleb’s EEG is tomorrow.  What that means is… Kaleb and I stay up until midnight by any means neccessary (read:  Wack-A-Mole, Nick Jr Dance for Kinnect – bought prior to my protest, The Neverland Pirate Band jam session, strawberry milk, an entire bag of frosted animal cookies, and lots of pep talks about why he can’t go to sleep).  We then wake up at 5am.  By we, I mean – I wake up at 4, groan, wake up at 4:30, zombie walk to the coffee maker, pep talk myself, and wake up Kaleb at 5.  Then it’s 9 hours of keeping him awake until we leave for the neuro, an hour in the car, and within the next hour he’s hooked up and ready to go.

Most kids would be thrilled to be able to stay up so late.  Hell, Mason is still awake dancing around his room, and I put him to bed hours ago.  Not Kaleb.  He’s been asking if he can go to bed since 8.  Oh, don’t I wish buddy.  Don’t I just wish.  I started counting down the hours during our Whine-tour AKA trip to Target at 5pm.  When I bought you the biggest Icee they sold.  I was counting down after dinner and bath time.  I was counting down when Milo decided to try to get run over by a golf cart.  Only 30 minutes left kid.  We are so close.  We’re so close I want to say OMG screw it and go to bed.  But no, we will stick it out.  And I will spend my four precious hours in bed wondering how the hell I’m going to keep you up all day tomorrow without the sugar I have been utilizing all night.

I guess I’ll just have to act like a crazy person… oh, wait.  Nevermind.

Until tomorrow internet world.  I have thirty minutes to kill with a sleep deprived 5 year old.

Sweet Escape…

My house is like The Twilight Zone this morning.  Kaleb is fast asleep on the couch, while Mason runs around like a potential loony-bin candidate.

Usually, I have a little trouble getting Kaleb up on school days, but even while sluggish he still is up and around every day by 7.  Mason, with his recently developed insomnia is sleeping from around midnight to 9am most days.  I woke up at 4 because Milo was threatening Kaleb who was attempting to find a way to cross our room to get to the bed (not an easy task since I’ve got the whole thing pulled apart at the moment).  Kaleb crawled into the bed and I fell back to sleep until 5 when I woke up with his head in the middle of my spine, his foot kicking me in the back of the head, and an all around pounding headache from the hour of abuse I’d already taken.  I shoved him to the other side of the bed, rolled over, and found myself staring at Mason jumping on his bed.

I’m fairly certain the noises I heard on my way to his bedroom were not coming from me – Frankenstein simply had to be walking in my shadow.  That’s the best explanation I have for the “Ughhhhh Grrrr Ughhh” noises filling the house at 5am.

Of course, Kaleb being asleep on the couch is a nice change from yesterday.  I now genuinely believe in the “Your kids will be 3 times worse than you” rule.  I really do.  Thanks for cursing me with that Mom.

I was a strange kid.  No big surprise there, I know.  I was relatively obsessed with Harry Houdini, Walt Disney, and Edgar Allen Poe.  By the time I was ten I’d read every biography on each of them I could get my hands on.  Clearly, my fascination with the world’s most famous escape artist has come back to bite me square in the buns.  Seeing as how Kaleb, for the fifth time in a year, emanated my childhood hero using nothing more than determination, and a window.  Mason is finally taking a nap, Kaleb is finally playing quietly watching Meet the Phonics, and I am getting some work done.  Suddenly, I hear the screen door to the back porch open and close.  I assume it’s one of Daddy’s friends, as that is common practice, and I don’t really think much of it.  I finish what I’m doing and turn around to say hello.  Instead, I find myself staring at Kaleb, spinning in circles on the porch and laughing his tiny hiney off.

You have got to be kidding me.  I go flying out to the porch, to find Kaleb already halfway across the back yard headed for his window.  Which he cannot climb back into because he closed it behind himself.  I am fairly certain at this point my head is reaching volcanic levels of “there is no way this is happening, there is no way this is happening, there is no way this is happening!”.  At this point Kaleb realizes that he is in trouble, but he still can’t stop laughing – which is totally not helping the situation.  I carry him inside, set him in the time out chair, explain as calmly as I could (read: through mostly clenched teeth) why what he did was bad, dangerous, scary, NOT A GOOD THING TO DO, and march to his room.  I stare at the window frame for five minutes before realizing there is no good way to handle this situation.  It’s not like I can screw it shut – can you say fire hazard??  So, I go to the garage, find the hand saw and a piece of wood, saw off the piece of wood, and cram it in his window, tightly enough that he can’t pull it out – but I can – thus preventing it from being opened by Captain Climb-Out-The-Window again.

This method was thoroughly tested by 9pm last night, and found to be temporarily effective.  Ha!

Friday we went to the neurologist – adjusted medication, got referred to behavioral therapy, received a letter informing the transportation department that it is dangerous for him to walk to the end of the street to meet the bus, requesting that the bus (you know, the one that already drives past our house after picking him up and dropping him off) pick him up in front of the house, to prevent him being hit by a car.  We also made an appointment to drive our happy bottoms back to Orlando tomorrow for a sleep-deprived EEG.  Which means:  Keeping Kaleb up until at least midnight tonight, waking him up no later than 5am, and keeping him going with no sugar in his system until the test at 3:30pm.  Yep, that’s going to be awesome.

Meanwhile, Mason is screaming bloody murder because he wants a spoon with his cereal (his milk-less cereal since he won’t actually use the spoon), but then tries to use the spoon upside down, successfully dumping cereal on the floor – which leads to him throwing the bowl full of Kix across the room, screaming like a banshee, dropping to the ground hard enough to make me cringe, and rolling around pulling on his hair for a full three minutes.  This is why you don’t have milk in the bowl kid.

Now I have to wrangle the Monsters and brave Walmart on a Sunday to do our weekly shopping.  Have I mentioned how much fun today is going to be??

Has your child ever pulled a Houdini on you?