Friday, August 31, 2012

The big bang just blew up in my face.

Right now I have horrible curses words going through my mind.  Horrible, horrible curse words.

Someone told me ages ago, "You have to watch The Big Bang Theory, Alex reminds me soooo much of Sheldon Cooper."  I don't remember who said it and I don't remember giving it too much thought, so I let it drift out of my memory.

If I remember who you are, you should probably start running.  Now.  When I catch up, I'm going to kill you.

I have this thing where I don't like watching shows having to do with Autism.  See, I live it.  The few minutes I do get to be by myself, I want to stare blankly at the TV and not think about anything.  The last thing I want to do, is be reminded of my own life.

But then there was a Big Bang Theory marathon the other day so I DVR'ed the episodes.  That same night we watched one episode and it seemed harmless, funny even.

Sheldon had a secret knock his friends had to do on his door.  His friends didn't do the knock correctly and there was a prolonged discussion on how doing the knock incorrectly precluded entry.  Alex was transfixed.  Mesmerized.   He was giggling and snorting so loud that at one point I thought he was going to throw up.

He looked over at me and said, "Mom, there are grownups like me."  Right then and there a new love was born.  Scoot over How its Made, you've been replaced.

The Big Bang Theory and NinjaGo, this is what
my life has come down to.....

And I have to tell you, I had mixed feelings about him watching the show.  I didn't want him seeing a studio production of what he deemed real life.  We had a discussion about actors and acting to which I received a, "Duh mom," like I was the idiot in the room.

Then then next morning.

Alex was up bright and early, and without missing a beat, he ran downstairs and turned on his brand new love, The Big Bang Theory.

I counted my lucks stars and rolled over.  It was about six-something in the morning.

See, we took the youngest out of her crib the day before and she started sleeping in a toddler bed.  The thing is, she never slept in her bed.  She latched on to the idea she was a free agent...

To say we had a wondering gnome was an understatement.  She had the new found freedom of a prison inmate and she's been wandering around the house at all hours of the night.  Do you know how creepy it is to wake up to a two year old, inches from your face, several times a night going, "Mine mommy, mine mommy???"  Creepy, totally creepy.

So yeah, when Alex got up at 6:00AM, I rolled over.

Big mistake.  Big, Big, BIG Mistake.

I came downstairs a little while later and was met with a barrage of questions, "What is coitus, mom?  Why would someone engage in coitus?  Is coitus something grownups do?  Do you like coitus, mom?"

"Errrr, what?  What were you asking?"  Inside I was shocked wide awake.  It was like he just took a tazer to my brain, turned it on and fired it directly into my grey matter.  Alarm bells were going off, "Danger, danger.  Red Alert.  Red Alert."  In my mind I was going, "Oh Gwad Fuck.  Did my kid just say coitus?!?  OMG, he totally did.  Who told me about this show again?!?  I'm gonna kill them..."

On that episode they must have said sex, sexual intercourse and coitus a million times.  I think they were trying to find Sheldon a date so his friends made an online profile for him.

There implications were unending.

All day I heard various questions, all sexually related, all about coitus.

This is hell people, this is hell.  My kids are asking about sex.  All day long, "Why would a person have coitus?  Is coitus the same as sex?  Why does it have two names?  It makes no sense.  Is coitus Latin for sex?"

All frigging day.

And people wonder why I don't watch TV about Autism.

Curse you Sheldon Cooper.  Curse you.

Monday, August 27, 2012

Birthdays and benders...

My daughter had her birthday on Friday.  I mention that because it went pear shaped before she even got out of bed.  Alex beat her to it.  That was problem number one.

Problem number two was that it was not his birthday.  

Before Lizzy even got out of bed, I was hearing, "I hate streamers!  When it's my birthday I don't want any streamers!" He was running through the house tearing down pink and white streamers my mom had stayed up late the night before to put up.  She put up all the decorations at night so when Lizzy woke up, she'd be met with garland and streamers and balloons.

Didn't happen.

Alex was taking them down faster than anything.  Ripping them off the fireplace, trying to pop balloons, smash things, rip streamers and tear the house apart.

I was furious.

"Stop it, stop that right now!  Stop pulling those things down right now!"

"NO, I hate streamers.  When it's my birthday I DON'T WANT ANY STREAMERS!"  He was still running around ripping things down.  We had several more negotiations which were to no avail.  He was not listening, not comprehending.

The abbreviated version...

"Go to your room right now.  NOW!"  Stomping up each and every step, I drug him up.  Furious.  He was furious, I was furious, he was still mumbling under his breath, "I hate streamers.  Hate them.  It's not fair.  I don't like streamers.  I hate you."

By that time, Lizzy was up.  Decorations were down and Alex was stomping around upstairs.

And then nothing was going to go right for him.  He didn't like his socks.  His pants itched.  His food tasted funny.  His fingers felt weird.  And then his shoes.  Oh my fucking God, his shoes.  He couldn't find the right pair and he couldn't possible wear a different pair of the exact same kind of shoe.  Oh no.  He had to have that exact pair, the pair we couldn't find.  Never mind we have replicas of the shoes so this doesn't happen but ohhhh noooo, not today.  Today, this was the hill he was going to die on.

I tired to help him, smacked my elbow on the cabinet so hard I saw stars.  I was furious.  I lashed out and yelled at him, "Now what?  WHAT?  Am I going to have to find your shoes every day?  Huh???  What happens when you're twenty?  What happens then, am I going to have to find your shoes then?  Huh???  Get to the car right now.  NOW.  I've had it."

I was seething.  Furious.  All morning he'd been pushing buttons and I'd had it.  That was the hill I died on.

This was not how Lizzy's birthday was supposed to go.

And then it hit me.  Hit me like a thousand bricks.  This is the way it's going to be with us.  This is how it is.  Autism's in our lives and it's in every part of it, like a nebulous vine, its worked its way into every crack and crevice of our lives.  Every part.  It's just not Alex who has Autism.  It's our whole family.  It affects each and every one of us and it affects us all differently.

And for some reason that bothered me.  Bothered me to the core.  Bothered me that my daughter didn't have a birthday without being affected.  Bothered me that for twenty God-damned minutes in the morning I was trying to redo something it took him less than a few seconds to undo.  Bothered my that he was so bothered.  And most of all?   I was bothered that as a mom, I snapped.

You guys know me, you know I try to put a positive spin on things and for the most part I meet our struggles head on with a good laugh.  I have to.  It's the only way I know to survive.  But.

This has me in a place I don't want to be.  Mad that I lost my shit and mad that I lost it in front of the kids.  Mad that a day I wanted perfect for my little girl, went up in smoke before she was even out of her pajamas.

This is the part of Autism that most people don't talk about, the part where we struggle, where we cry, get angry or we just need a break.  Where, as a parent, I can say it never ends.  I wouldn't be telling the truth if I only shared the good.  Well, this is it, this is the side that makes me want to scream for the hills and scream a slew of cuss words so loud they could hear me in hell and be afraid.

I know he's struggling and I know he's upset.  I know this is the start of school and we're all maxed-out.  I know that, I get it.  But there are days where it all gets to be too much and I don't like it.

This was one of those days.

I only wanted one day.  One damn day.

Note: I'm still in a funk and I'm working my way out of it.  Please know, I love my son, I do.  There are times when I don't love everything that comes with Autism, not to admit that would be a lie.  I'm not trying to devalue anyone who is one the Spectrum or who has Autism, I'm simply saying that there are days when this is hard, really really hard.  

Friday, August 24, 2012

That poor juice box didn't stand a chance.

So the other day after school we were driving and I gave Alex a juice box.  This has been our first week of school and I've unloaded our calender.  I've cancelled everything except one activity so that he can come home and decompress.  School's hard on any kid, add Autism and lets just say this week's been a bit stressful.

Today was the day he completely freaked out.  Self combusted, lost his lid, whatever.  He melted down over a frigging juice box.  In the car.

From the back seat I hear all sorts of sputtering and gagging.  Oh Shit.

Apparently I had the wrong kind of juice box.  I deviated from our normal brand of juice and he noticed.  Fuuuuuuck.

"Mom, MOM!!!  I can not drink from this juice box.  I simply can not ingest juice that is 66% juice and 34% inert material."  He's in the back seat of the car, holding on to the offending juice box, flapping and gagging.  Juice going everywhere.

"OK, well hon I'm trying to drive here.  Just put the juice box down and I'll take a look at it when we get out.  Listen.  Listen to me.  ALEX, listen.  I need you to listen with your ears."

I get an exasperated, "What?" from the back seat and a, "No, mom, NO.  I can not simply put the box down.  We're in the car.  Where am I supposed to put it?  I don't want it near me.  I can't have it near me.  I drank some of it.  Mom, I think I'm gonna to puke."

Now if you want to get my attention fast, say those three magic words, I'm gonna puke.  Nothing gets a reaction out of me faster.  There are very few things in this world I well and truly despise and puke is one of them.

"OK, get the bucket if you have to but I tell you what.  I'm not cleaning your puke this time.  New rule.  If you make yourself puke, you clean it."  If I had a dime for the number of times I've cleaned puke in our car, house, pool, where ever, I'd be a bloody millionaire by now.  Or if Alex did the math, I'd have at least, $31.20.  Whatever.

We have an old bucket/Tupperware container in the back seat for this very reason. We moved from a bucket to Tupperware because of the lid factor.  If you've ever sat in a car with puke, you'll know how vital a lid can be.  Trust me.  

Exhibit A.  

"What?!?  I can't clean my own puke.  Mom, THAT'S DISGUSTING!"

"Oh yeah?!?  Well how do you think I feel every time you puke?  Do you think I like cleaning your puke?  No, I most certainly do not.  I think it's disgusting too."

"Well, if I can't puke, now what?  I drank it, I may die. Now what?  I'M GONNA DIE."  He's writhing in the back seat, I'm watching juice fly everywhere, still trying to drive, and thanking Good God All Mighty that the straps on his car seat are holding.

"No, you are not going to die.  No one has ever died from drinking juice.  If people died from drinking juice, don't you think the juice industry would be out of business by now?"

That got him, totally got him off of thinking about his juice induced death, he was thinking, thinking.  And he was calming down.  Just that quickly, he'd calmed back down.

"Well,  Mom.  People can die from drinking water, you know.  There is something called 'water intoxication' and people die from drinking too much water."  He's telling me this, juice forgotten.  Sure, he's flicking his wrists and still worked up, but he was coming back.

From the rear view mirror, I can see the juice has been launched to the floor of the car.  He was looking out the window, still thinking.  Quiet.

The rest of the ride was in silence.  I turned off the DVD player and we just drove.  I kept looking back at him.  He was deep in thought and I just let him be.

When we got to where we were going, Alex asked, "Mom, when we get to group, can I throw the juice in the garbage can?  And next time?  You need to remember the right kind of juice box.  I'm very disappointed in you right now."

Juice box, you are dead to me.  

I watched as the threw the juice into the garbage.  I gave him a squeeze and whispered,  "I promise to buy the right kind of juice next time.  And I'm proud of you, you didn't puke."

He gave me a sigh, a big exasperated sigh, and just that quickly he wiggled away from me.

Don't worry, there's no way in hell I'm going to be buying the wrong kind of juice box any time soon.  Anyone want a case of Fruitopia?

Monday, August 20, 2012

The wedding that was.....

So we made it back from the wedding up in North Dakota relatively unscathed.  And by that I mean we're all alive.  We made it back home and I was never so glad to be back in our house.  Not to say we didn't have fun, we did.  There is just a unique sort of hell that goes along with being trapped in your own car upwards of eleven hours, two times, that makes you want to crawl out of your own skin.

Things that may, or may not, have happened:
  • We had a flat tire smack in the middle of Iowa.  I take that back, I really don't know where we were.  All I know is, we had to drive back to get to a Toyota dealership to replace our Dunlop no-flat tire.  The irony didn't get past me on that one.
"MOM!  They have rules at the rest area!"

  • We may have trashed the waiting room of a certain Toyota Dealership.  I tried to clean up as best as I could but they had a popcorn machine.  It was a no-win situation. 
  • The kids may have felt-up all the taxidermy bears, deer, turkey and ducks at my friends house.  Her husband may have started a new nervous twitch when he saw Lizzy stroking a fur backwards and named a duck Sparkle.
  • I may have had a drink too many after we lost the baby at the rehearsal party and it may have happened about the same time Alex was puking off the side of the pool and it may have happened the exact same time Lizzy got her toe stuck in the base of a table. 
  • I may, or may not, have said, "Lizzy stay here while I go find your sister.  Wait, you can't move, your toe's stuck.  Well, small blessings."  
  • Lizzy may or may not have screamed so loud you could hear her in Canada.
  • When we found the baby she was out in front, with the smokers, trying to borrow a lighter.  Alex may, or may not have, proceeded to question them about their choice to smoke and he may, or may not have, pulled up an image of a  "smokers lung" from his i -Touch...
  • Lizzy may have sat through part of the wedding sobbing because her, "vagina hurt."  Turns out it was not her vagina, it was her underpants crimping her style.  
These make me giggle every time we pass one
and if you don't get it, I'm not telling

  • Alex may have read off every single exit on the map and we may have stopped at every rest area so he could get a new map and not miss a thing.  I may have stopped listening somewhere outside of Kansas City.   
  • We may have had approximately fourteen fast food meals in a little under four days.  The teenagers at Long John Silver's may have wanted to kill our kids for ringing their bell over 3,000 times.  
  • And we may, or may not, have had Juano's Mexican food over three times while in Fargo because it's Alex's favorite.  I may, or may not have, spent more time than I would care to admit on the toilet. 
  • We may, or may not, have had a great time seeing old friends and thinking about old times.
Kids saying goodbye. 

Don't get me wrong, we had a blast.  The kids had fun, we were exhausted and I swear I think I aged several years when the baby went missing.  So that was our weekend that was, up in North Dakota.

While it's good to be home, I miss my old friends.

Friday, August 17, 2012

And so it begins...

So we came back from our quick trip, which you totally know I'm going to post on, but right now we're looking down the barrel of the gun called SCHOOL.

We had our annual IEP/meet the new teacher meeting a day or so ago and I'm nervously optimistic.  Every year, our school does this big thing where you gate rush the main doors of the school at 4:30PM.  That's when they post the student/teacher list for the year.  Right after that, everyone goes into school and spends time meeting the teacher, sorting through their school supplies and generally getting to know everyone.

This has always been a mess for Alex.  Let me rephrase that, it's what I call:  A Cluster-fuck of Epic Proportions.

To go into school with every single student, with parents and siblings in tow, is meltdown producing.  To go late in the afternoon is mind blowing.  And to not know what's going?  It makes him sick to his stomach.  Add all the excitement, the bustle, the noise and pushing and shoving and its all too much.  

Our school works very closely with us and for that I am grateful.  I know the teachers took out time from their day to help us, to help Alex.  To those teachers that are like mine--thank you.

We no longer do the massive meet and greet at 4:30PM.  We have a separate meeting a few days before.  I take Alex in to school and he gets to spend about 1/2 hour or so with his new teacher.  They sort out school supplies and they figure out where things go.  He gets to see his desk, where he's sitting and what the classroom looks like.  He finds his cubby, puts his supplies away and this is a big one---he gets to see the classroom schedule.

We just had our meeting for this upcoming year.

His teacher went over some of what they are going to learn this year and you could literally see him take it all in.  "Mom, we're going to learn cursive!  We're going to learn how to write in cursive!  Quick mom, where's my pencil?"

It was quiet.  It was calm.  He was nervous and he stimmed.  He sized up his new teacher and they nervously chatted.  He met his other teachers as well---he has three new teachers this year, so for us, this year is already one of tremendous change.

The first day of school was yesterday.
So far, so good.

He did so well meeting his teachers.  So incredibly well.  Sure, he stimmed and he was anxious and nervous beyond belief but he was also excited.


And I'm hanging on to that excitement.  I have a feeling it will wear off sooner than we all expect and we'll be dealing with sensory overload and meltdowns but for right now I'm excited with him too.

Wish us luck.

Friday, August 10, 2012

Steer clear of I-94. We're going to be on it.

By the time you read this we should have worked our way from south Kansas City to North Dakota.  See, we left on Thursday to go to a wedding.  A wedding that we could not miss.  One that under any other circumstances I'd have written it off and sent back the reply card with the "Unable to attend," box checked off faster than you can read this paragraph.


This is a wedding we didn't want to miss.  It's the wedding of a dear friend.  She's one of several friends that make my heart stray to the Northern Plains.

North Dakota: home of the sugarbeet, soybean and sunflower.

And then we turn right back around and come home on Sunday.

And then school starts.

And because of that, we're anxious, nervous and stimming.  We've had a volley of emails regarding meeting new teachers, of which we have three new ones this year, IEP concerns, agendas and the list goes on.

Somehow our summer is over and we're right back to another school year.  And I'm loathe to see it happen.

Like a switch, Alex has been turned on, stimming---flicking his wrists, shaking his head back and forth at lightening speed and melting down at the slightest of things.

I'm sad to see our summer melt away, right before our very eyes.

So by the time you read this, we'll have dealt with car sickness, cussing, swear words and more fights than you can imagine.  And all of that before we're even out of the Kansas City metro.  Add to it, I have a new found fear of our car tire falling off, and visions of how horribly wrong our vacations can go, and I'm nervous too.

I don't know how much I'll be able to access the computer over the next few days, as it's our go to item when Alex is stressed.  If I don't surface by Monday I'd start to worry.

Monday, August 6, 2012

We're being squeezed.

When Alex was younger I lived in fear that he wouldn't talk.  I think it was that way with all my kids, I think everyone worries to a certain degree about this.  Every last one of my kids started talking late and when they did start to talk?  They never stopped.  There was a steady stream of conversation, chatter in the house.

Both the girls have an understanding of when you can talk and when you can't.  Alex has not acquired this small bit of information.

Consequently, when he did start talking, he didn't stop.  When something was on his mind he'd blurt it out, whether it be at dinner, or smack in the middle of going to the bathroom.  I've been listening to this boy talk at me for eight years.

And the thing is, he doesn't let up.  He doesn't stop talking.  Ever.

Do you know how draining it is to have an eight year old question everything you do?  Or give you a running dialogue on how you could be doing it better?  Correcting you every time you make a mistake?

From taking the chicken out of the freezer, to how I use the computer, to how often he thinks he should take a shower, there is a conversation.  There is a negotiation, a lesson, or a correction, not for him---for me.

Every day.  All day.  The conversation does not stop.

And the thing is, it's my job to teach him the difference between talking to someone versus talking at someone.  It's been a hard lesson to pass on---for both of us.  

I've come to deal with this constant stream of conversation headed in my direction in several ways, depending on how much I can take, versus how willing I am to debate the issue at hand.

At first I was so damn happy he was talking, I talked back and engaged him.  He loved it.  I loved it.  But as he got older, the demands became something I couldn't handle.  I simply could not stand around and talk about how a lake's ecology progresses through time or how a battery functions or how the transformer on the telephone pole works.

I tried redirecting him to another project but that invariable let to more questions.  Even the volcano project we did last week ended up with us in front of the computer Googling the earth's mantle and the ring of fire.

Our volcano has jewels and grape sticks.
That's how we roll.

And now he's no longer is just interested in acquiring information.  He's interested in when I'm going to be done making dinner and he'll set time limits on what I do.  He's slowly trying to work our schedules around what he wants to do.  What he wants to do and when he wants it.

I couldn't figure out why we've had an uptick in behavior.

And then it dawned on me.  We moved into August.  He starts school in two weeks.  He's nervous, anxious, fearful.  He wants to go back to school but he's looking down that great big gaping maw called uncertainty.

I'm looking down it too.  For as busy as this summer has been, I've liked to see my kids stress free, wrangling with each other, and happy.

So for right now I've figured out what he needs and I'll be on the receiving end of our conversations.  I'm OK with that.

Friday, August 3, 2012

I think I grew a set of balls.

I know I've mentioned in the past that Alex takes Tae Kwon Do.  It's the only sport he'll do.  We don't do group sports such as soccer, football, basketball or baseball.  No T-ball for us.  Trust me, we're OK with that.

We searched long and hard for our current Instructor because we wanted someone who understood our child and understood Autism.  Someone who knew there would be difficulties with gross motor skills and motor planning.  Our current Master not only understood, he took Alex under his wing.  Alex loves it and he's been flourishing.  His instructor told me a while ago, "It's not what the body can do, its the mind.  The mind and spirit, these must be good.  The rest will follow."

And so we began our time at Tae Kwon Do.

Lizzy, hauling ass.

I was sitting in class the other night and I was watching my kids do all their shouts and kicks and whatever else they do, generally minding my own business.  Alex was working one-on-one with an instructor, working on forms.  All the kids generally spend some one-on-one time with an instructor throughout the class and Alex loves for me to watch him.

So unlike most of the other moms I don't drop and run and then scamper off across the parking lot to Starbucks.  Yeah, I'm so on to you ladies, I stay put for the whole fifty minutes and watch my kids.

And Alex loves it.  Loves to know I'm watching and he beams when he makes eye contact with me.  And that, right there, is why I stay glued to my seat the whole time.  He seeks me out and looks into my eyes and smiles.

He smiles.

So while the other moms are getting all hopped up on their lattes, I'm getting my smiles.

The kids getting their swords.  Awesome.  

Anyway, there was a new mom who's kid just joined so she sat next to me.  I guess she didn't get the memo that the cool moms bust it to Starbuck's right after drop-off.  After watching Alex for a little bit she leans over to me and says, "Is that your son?"

"Yeah, sure is."  I say as I'm giving him a thumbs up and getting a smile back.

"I just love all those faces he makes.  Look at him!  He really gets into it, doesn't he?  Look at how he moves.  And all those grimaces, frowns and wiggles.  He really likes to get into it doesn't he?  Wow, look at him!"

And then she started to giggle.  There was something about what she said and how she said it that didn't sit well with me.  She wasn't outright making fun of him but it was insidious and right below the surface.  It was there.

For a second I just sat there in shock.  I wasn't quite sure what she was saying.  She was giggling at him and how he moved.  I went from intense rage to grief in zero to sixty.  I got that hollow feeling in the pit of my stomach that you get when you go over a hill too fast or you're just about to take a major exam or something.  I blinked a few times trying to register what she was saying.

She didn't have a clue.

But she was laughing.

At my son.  

She was laughing at my son.

And then I started talking, almost a whisper.

"I normally don't go around and advertise this, but my son has Autism.  Those faces he's making?  Those are facial tics or stims that he does when he's stressed.  He can't control them.  And right now he wants to do well and impress the instructor so he makes more of them.  And how he moves?  With Autism he has difficulty with fine and gross motor skills.  Especially here in Tae Kwon Do, the gross motor skills are really hard for him.  These are skills which makes some of the movements and forms difficult for him, why he looks funny to you, I guess."

"I'd like to think you meant no harm to me or my son and you just didn't know.  I guess that's why I'm telling you this.  I hope you know what the face of Autism looks like.  If you'll excuse me."

And with that I got up, went to the bathroom, and cried.

When I came back out, she had gone.  I guess she went to Starbucks.

Note:  I am telling you this because, well honestly, I don't know why.  I came home and immediately started typing, banging out what happened.  And then it took me a few weeks to hit publish.  I think I'm telling you this because this was very difficult for me.  Normally I don't say anything.  Just let things slide.  This time I didn't.  This time I found enough of whatever to stand up and confront ignorance.   

Little by little we can change things.  Little by little.

And I am trying to get around to all your blogs....I'm trying.  This summer has been long, hot and hard for us.