Monday, November 5, 2012

I talk about my silence

I've been quiet for a reason.  We went on a little break for a reason.  I've thought long and hard about what I'm going to say.

Alex has turned nine.  He's getting older.  He's more aware of the situation around him and becoming aware of all things around him.  He knows I write about Autism and I write about him.

He has asked me to stop.

As his mom I have taken what he's said to heart.

When Alex was younger it was easier.  The lines were not as vague as they are now.  I was able to write about our lives and what happened.  He didn't express any issue with what I was doing and for the most part things were fine.  But as he's gotten older the lines have become blurred.  They're not as clear.  Time sneaks up on you and before you know it, you're looking at a child who is no longer a child.


Alex is very much like me--very private and happy with a few key people in his life.  I am afraid to say more about him, about how Autism impacts him, as he's very clearly expressed his reservations.

To continue in the fashion I have been would be wrong.  I don't want him thinking there is something wrong with him or that I need to talk on the Internet because of him.  I can see he is starting to think that, and as his mom, I have to change what I am doing.  I have to take care of him first.

I'd love to tell you how we were playing Four Square and I drilled him in the face with the ball because I got so fed up with being hit because he wasn't using all of his social skills.  I'd love to tell you more about that but I simply can't.

So I have to tell you in all honesty I'm not sure what I'm doing, what direction this will be going or even if this will continue.  I thought an explanation was due.

Thank you all for all of your kindness and support.  You have truly meant the world to me and there are simply no words to reflect my gratitude.

Hugs and love,
Lizbeth


I will remain on Facebook and I will still have my email account, Lizbethcole29@yahoo.com. 

Once I figure things out, you'll be the first to know.  

Friday, October 19, 2012

I'm going to be shark bait.

Remember when the kids got sick?  And then the husband got sick?  And then I got sick?  Remember that???  Well, somewhere in that time frame, I snapped.  I frigging lost it.  Had enough with sick kids, sick husband and sick me.  I snapped like a twig.  

I did the unthinkable, called the husband at work and begged, pleaded and then demanded he come home and help me out.  I may have suggested I was going to throw myself out an upper window, or something that drastic, to get his attention.  I may have put that suggestion into his head, I don't know.  I was exhausted, I was feverish and I was quite possibly hallucinating.  

And I may have thrown a fit like a two year old asking, begging, pleading that he please go to Walgreen's and get antibiotics for all of us or I may throw myself out that same upper window again.  Now to be clear, if I did throw myself out that window I'd land in the bushes, probably break an arm, or some other extraneous appendage, and then I'd still have to clean the kitchen and make dinner because the fall would merely maim and not completely do me in.  

Anyway, in my delirium and feverish state I may have said something along the lines of, "I need a break.  I can't do this.  I can't have you sick people all needy and depending on me when I'm sick.  Why, why, WHY, can't our kids just sit in front of the TV?  Why can't anyone just eat a regular pizza and not puke?  And WHY is it so frigging cold in here?"

To which my patron saint of a husband had the stones to say, "Hon, it's not cold in here, you're burning up." And then, thinking I was more lucid and in a more adventurous mood than I really was, he said, "I can't help if the kids got your genes and don't like pizza."   

In hindsight I know he was trying to be funny but trying to be funny with your wife who's not showered in three days, handled more puke than necessary in any one lifetime, and has been without sleep and sick herself for the last week was probably not in his best interest.   

No, I know it wasn't in his best interest.  

And that's where I snapped.

"I can't do this.  I need a break.  I'm sick.  I can't be in charge of everything when I think there is a pony in the kitchen and can't you empty the damn dishwasher?  And for the record, I do not have bad genes.  They come from your family!"

I said a lot more than that but it was all nasty, mean and not necessarily true.  There was no pony in our kitchen.  My husband backed out of the corner I put him in and the next day surprised me by saying, "I've worked it out and we're going away for a week.  No kids, no nothing, just you and me."

And for a brief moment I was happy, I had an out.  I knew there was an end in sight.  And then I asked him, "When are we going?"  Knowing that one week out of four were pretty good odds but still...


And as it turns out, we're going down to Sanibel.  For one solid week, we'll have no kids, no nothing, just the two of us.  And one tag along bag full of tampons, pads and pain killers.

I'm going to be shark bait, chum.

AWESOME.

Wait.  You don't think that was his plan all along, do you?


Monday, October 15, 2012

I blame it on the root-beer floats.

Last week was a hard week for us.  Filled with meltdowns, angst, and general anxiety, it wasn't one of our better weeks.  Alex had a party in the classroom on Friday, and in hindsight, I suspect all things were leading up to that party.  I kinda sorta knew it, but couldn't wrap my brain around all he was going through.

Suffice it to say, there were too many changes in one day, too much anxiety leading up to Friday, to the party that afternoon.  Long story short, one of the things that put him over the edge was that they were having root-beer floats for the class party.  I didn't know that till we were home that evening and talking.

"Hey hon, how'd the party go?"  I asked, knowing my answer was going to be the shortest one possible....

"OK."

"Well, did you eat something?  Don't you usually have some kind of snack at these parties?"  I knew it was a pretty safe question and one he can easily answer.  It's a straight out fact, so he does OK.

"Mom, they had root-beer floats but I didn't have any.  I was very disappointed in the teachers and the other students.  They were drinking root-beer but I didn't have any.  I didn't think you'd want me to have it.  Mom, they were drinking beer," he whispered, like he was letting their secret out.

He was upset.  He was near tears, exhausted and worn out.  He didn't have a meltdown, he just was defeated, confused.

After a long day, this is what broke me---seeing him that exhausted, the literal thinking and all the anxiety that came with misunderstanding.  He thought it was real beer.  No one told him, they just assumed he knew....now I'm not assigning blame or fault.  I don't think there is any.  Alex is not one to articulate much so I suspect he kept it to himself and when they asked if he wanted any, he just declined.  

I did send in a note to school letting them know what happened and later that night, I explained what root-beer was and how it's good with ice cream.  That it's really not beer and its OK to drink.  

We settled in for the weekend, stuck to our routine and slowly things turned around.  We watched the rain fall, watched the lightening and counted till we heard thunder and made a few of his favorite meals.

And later I asked, "Hey, do you want to try a root-beer float?"  He looked at me, flashed a smile and said, "Ugggh, mom, you know I don't like carbonation.  It makes me throw up."

This time?  He knew what root-beer was.


Note:  Today is Alex's birthday, he will be nine.  I can't believe how fast time has gone!  I'm going to be busy making brownies with chocolate icing, hanging the Happy Birthday sign but no streamers and wrapping the exact Lego's he's wanted, and seen, so there will be no surprises.  Hopefully, it will be exactly the way he wants it.  




Friday, October 12, 2012

My kid can negotiate better than your kid.

Good Lord, God All Mighty.  My son has been starting up on something new and I'm not liking it.  Not liking it one bit.  Seems when he doesn't get his way, when I ask or, God forbid, tell him what to do, he turns into the defense team representing OJ Simpson.

A simple request turns into a full fledged negotiation and the negotiation takes longer than the actual request to begin with.  There have been times where I've just given up and said, "God dammit, I've asked you to go do something, please go and do it.  NOW."

That is met with, "ITS NOT FAIR.   I HATE YOU.  I'M IN THE MIDDLE OF MY GAME AND ALL MY DATA WILL BE LOST.  AGGGGHHH!!!  I HATE YOU!"  And if that weren't enough, he goes up to his room stomping all the way, all thirteen steps, slams his door and tears apart his room.

Add to it, he's still yelling, "I HATE YOU.  I'M GOING TO MAKE YOU HAVE A BAD DAY.  I'M GOING TO MAKE YOUR DAY HORRIBLE."

I try my best to ignore these statements while he's coming undone but it's hard.  He seems to think that because he's having a bad day, everyone else around him should as well.  He takes it upon himself to make sure your day is as bad as his.

A picture of the two of us he tore to bits in a meltdown
along with half of his room.  This is what hurt the most.

There was one particularly bad day where he said these things to me and I just lost it.  Lost it completely.  I lashed back at him and yelled, "You wanted me to be mad?  You wanted me to be mad?  Well now you've got it.  I'M MAD.  NO, I'M PISSED OFF.  Look at me.  Look at my face and see what it looks like.  That's mad.  Now go to your room, NOW."

At the time, even though I was madder than hell, I was telling him to look at my face.  Some weird kind of teaching moment I know.  Even through my own anger I was still trying to teach him.

And he looked at me, scared to death and said, "Can you not make chicken nuggets for dinner?  I prefer mini-corn dogs."

Fucking mini-corn dogs.  I lost it over mini-corn dogs.

After a few minutes I went upstairs and listened at his door.  I could hear him tearing apart his things.  The meltdown was over but he was sobbing and sniffing.  I felt like shit.

To be honest, I was sobbing on the other side of the door.

A little later, I talked to him and we patched things up but not without residual memories for both of us I'm afraid.

I know he says these things because he's out of control and he's seeking to gain that control back.  I know that.  I really do.  He's trying to put his mind, and his world, back the way he wants it.  The way he wants it to be.  But it doesn't always work that way.  He can't play his i-Touch all the time and he can't be in control all of the time either.

I know these things and I know why he's lashing out but sometimes this ride is hard.  Sometimes I loose it.  And sometimes I loose it completely.

I know this new skill of negotiation comes from the stressors of the day, school and everything else that puts his mind to worry.  I know this is his way to seek out stability in his life.  I know that.

So asking him to do a simple thing such as putting his folder in his backpack or putting forks on the table will not happen, it's going to have to wait.  It's too much for him.

I will do it.

And I'm OK with that.


Note:  I write this here because I lose it sometimes.  I do, we all do.  We wouldn't be human if we didn't.  I used to be afraid or ashamed to admit that, that I'd be less than a 'good mom' if I said that out loud.  

I put words to what happens in our house so others may realize they're not alone.  That we all, occasionally, have a moment.  Deep down, we're all doing as best we can.  


Monday, October 8, 2012

I talked to a bunch of third graders...and I liked it.

I went into school the other day to talk to Alex's class about Autism.  Nothing instills fear in me as much as talking to a small hoard of third graders.  Kids---they are unpredictable, they are young and for the most part, they say what's on their mind.

They scare me.

Earlier in the year we had an incident where Alex was bullied and that spurred the question of, "What do the kids know about Autism?  Do they know anything?  Do they even know he has it?"  The answers came back as no, no and no.  The kids knew nothing.

I though that maybe if they knew something, heck anything, there may be some compassion.  They may have some understanding of why he does what he does and maybe with understanding would come some form of acceptance.    

I'll be the first to tell you, I worked with our school to do this.  Our teachers are great and in some ways I am really blessed.  They get it.  They get Alex.  They get me and they are willing to work with the things I suggest.

I had a PowerPoint presentation and from that presentation, I made a book for each child in Alex's class.  I wanted each one of them to have something to bring home so their parents could see what we went over in class.  Truth be told, I did it in the hopes that the parents would know what I talked about, and maybe just maybe, there would be further discussion at home.

A thing of beauty.  

Anyway, it turned out to be really interesting.  And enlightening.  For all of us.  The kids were really interested.  The teacher had told the students on Monday I would be coming in, later in the week, and asked if they had any questions about Autism.  None of the kids new a stitch.  They wanted to know things like:
  • Can I catch it?
  • How do you get it?
  • What is it and where does it come from?

So when I went in last week, we had the presentation on the White Board.  They use this all the time in class and its basically a computer screen on a white board (imagine that) on the wall.  The kids all sat around in a circle eating their snacks and before I could even start a boy asked, "What is it?"

I was nervous, scared and worried.  Alex had elected to stay and listen and I was scared to death he would be upset or have a meltdown.  

"Well, my name is Mrs. Cole and I'm Alex's mom.  I'm here to talk a little bit about Autism.  You all had some really good questions for your teacher earlier in the week.  I guess you should know that the reason why I'm here talking to you about Autism is because Alex has Autism.  Did you guys know that?"

I was met with wide eyes and blank stares and a few kids chomping their Doritos's.  Alex was quiet.  He was in the back of the class and his para was next to him, keeping a close eye on him.    

"So you had questions about how do you get Autism and if you can catch it.  Those are really good questions..."

Still, twenty-three sets of eyes, all wide open, all with blank stares, looking right at me.  It was like looking down the barrel of a gun.

"A person is born with Autism.  You can't catch it.  You just have it.  It's like you have brown eyes or blond hair.  You have what you were born with.  When a person is born with Autism, it means their brain is a little different.  Its just the way a person is born.  So just like your hair or eye color, you're born with it.  It's not good or bad, its just different."

"Let me ask you guys a question, do you guys know the gaming devices, what are they Nintendo and PlayStation??"

They all started talking at once.  I think at first they wondered how an old person like me would even know about Nintendo or PlayStation.  Either way, you would have thought I told them Halloween was in twenty minutes.

They all started talking, "Oh My God, yeah!  We have those at home!  Do you know we have both?!?  You can't play them with each other....my dad says its a conspiracy."  No lie, that's what one kid said.  It was perfect.

All the kids were talking about which games they liked to play and which ones were better....

"Well yeah, OK, lets go back to those two kinds of games.  They both have different operating systems.  They are the same but different, right?  And like the brain, you can't see those differences, they are on the inside, right?  Just like the operating systems of the games---the differences are on the inside."

I had them thinking.  They were really quite and pondering.  The Doritos's were left off to the side of a criss-crossed applesauce set of legs.

"Well, lets say our brains are like those operating systems.  Lets say for this class you all have brains with a Nintendo Operating System, OK?  And let's say that Alex's brain, his brain, he has a PlayStation Operating System.  You guys following?"

Now a lot of heads were nodding up and down and there were a few hushed, "Ohhh's."

"So what that means is this, when your brain receives information from the world, lets say right now--me talking, the lawnmower outside, the hum of the computer, the rattling of your snack bags, all of it---your brain processes it with a Nintendo operating system.  Well, Alex's brain takes all that same information---me talking, the lawnmower outside, the hum of the computer, the rattling of your snack bags, all of it---he processes all that same information....but with a PlayStation operating system.  Ya still with me?"

I had twenty-three nodding heads and dead silence.  I could tell they were getting it, they were totally getting it.

"So what that means is....you all process information one way, and he processes that same information a different way.  It's not wrong, its not bad, its just different."

A hand went up.  "Is that why Alex uses headsets?"

It was like the floodgates had opened.  "Yeah, is that why he wears those things???  Can we see them?  Is that why he wiggles?  And shakes?  And leaves the class sometimes?  Hey, can we try the headsets?"

The kids knew.  They knew he was different, they always have.  They just didn't know why.  And they were afraid to ask, you could see it on their faces as plain as day.  All this time---they knew.

"Yeah, that's it.  His brain processes things differently from you so he responds differently.  So when you see him wiggle or.....you know how he pulls his shirt up over his mouth sometimes?"  And I had the kids.  They all looked around and were a bit uncomfortable here---Alex pulls his shirt up over his face as a stim.  The kids got it, they understood it.  They knew it was weird, it was different, it was kinda sorta not right.  They all knew it but they didn't know what to do or if it was even OK to ask why he does what he does.

"Well with Autism, sometimes the brain can get overloaded.  When that happens he needs a break.  That's when he leaves.  He goes down to the OT room and takes a break.  It gives his brain time to catch up with his body.  He's not in trouble or anything.  His body and brain just need a little extra time to catch up with everyone else."

And that, hands down, was the start of a the best time I've ever spent in the classroom.

I went through why he does what he does and how they can help.  How to be a friend, what to do with him and what not to do.  And that sometimes being a friend is work but in the end it would be worth it.

The whole time I kept my eye on Alex.  I was so worried about how he felt, about what I was saying.  I was outing him.

To be clear:  I asked him before I even agreed to talk to the class if he was OK with it.  I asked if he wanted me to do it and he agreed.  He wanted me to come in and talk to the class, he just didn't want to be there.  At the last minute, that morning, he changed his mind and we all agreed that we would keep to his wishes.  We would do what he wanted to do.  This was not about us.  This was about us helping him and if he was not happy with that, or uncomfortable in any way, then the deal was off.

The amazing part was?  As soon as the kids asked to see his headsets, Alex piped up from the back of the classroom, "You wanna see them?  That would be awesome!  Let me show you how they work...."  He worked his way from the back of the room to the center, with his headsets, and started showing them to the other kids.  And he smiled, a big happy smile.

And in that moment I found hope.

I found hope.




Things we did that worked:
  • We respected what Alex wanted, every step of the way.  
  • The teacher asked the students questions about what they knew, and didn't know, about Autism a few days prior to me coming in.  I worked those questions into the presentation. 
  • I did a PowerPoint so the kids had something to look at.
  • The PowerPoint was turned into school prior to me coming in so they knew what was going to be discussed.  No surprises.  
  • A booklet, made directly from the PowerPoint, that went home with each child so their parents could see what we talked about.
  • Using the comparison of a Nintendo Operating System to a PlayStation Operating System to define the differences in their brains.  For whatever reason, they totally understood what I was saying.  
  • We kept it short.  The whole thing lasted 25 minutes, tops. 
  • I could not have done this without our teachers and their support and understanding.  

I did forget to mention---around slide 13, where I talk about making friends, I went over "Social Rules" and how they are very difficult to understand.  That with Autism, he often needs help understanding what those rules really are.  It can be anything from standing in line, to playing a game of tag, to getting food from the cafeteria.  That all the rules they understand and just 'get' they are difficult for him.  I tied that back in to the areas where they can help.   

So that's it, I hope in some small way this helps if you are going into the classroom.

Friday, October 5, 2012

And then we tried to play golf.

I went in yesterday to talk about Autism with the children in Alex's class.  This is not that post.  That will be on Monday.  I had problems linking Power Point to Blogger so it will have to wait till Monday.

Over the past weekend we took the older two out to the driving range to chuck some balls.  Alex has been practicing golf in the back yard for a while now and while I don't worry about balls flying and smashing windows, I am getting a little concerned with the gaping maws he's putting in the yard.  You have to understand that for every ball he hits, he wiffs about five.  That means I have five brand new chunks of grass/dirt/mud to replace for every one he hits.  Lets just say I have a shitload of holes in my yard right now.

Anyway, we decided to up the ante and go to the driving range.  Now, I'll be the first to tell you we live in a stuck-up, snotty, fake boob, my ring's bigger than your ring kind of neighborhood.  I think its funnier than hell and oftentimes I wind up staring at their fake boobies, trying to figure out why the nipples don't line up and how on earth can she walk with yoga pants stuffed that far up her crack?

That's the kind of girl I am.

Anyway, we went to the driving range.  It was outside, so we were using our outside voice.  Our really loud, Oh My God I'm so excited to lob a few balls in someone else's yard and OH MY GOD, there is a machine that gives you balls?!?  HOLY COW, Dad you gotta come and see this voice.  That was the kind of voice we were using.

Oh My God, a ball machine.
Yes, you were supposed to read into that.  

And then I looked over to the driving range to see everyone staring at us.  Every Single Person.  Clearly we'd not gotten the memo to shut the frick up while at the driving range.  And do you know what I did?

I smiled back at them, at every single one of them.  I didn't explain a thing, I just let it be.  I'm to the point that if I say anything, or try to explain away his behaviors, I'm lessening him, I'm devaluing him as a person and I won't do that.


I just smiled at the people and quietly explained to Alex that we have rules at the driving range and one of them was to use an inside voice outside.....I'll save you the dialogue that everyone heard but suffice it so say it made no sense to him.

Honestly, I say can't blame him.  

He was so excited, he was having such a good time.  He couldn't believe there was such a thing as a golf ball dispensing machine and he was trying to figure out if the mechanisms were similar to a pop machine.

They were.

There was one husband and wife duo who were looking at us like we were devil spawn incarnate.  The thing is?  She got it right away.  She understood the extra time we were spending with him, telling him how to hold the club, how to bend and how to use a inside voice, outside.  She got it.  He...well, he didn't.  He kept staring at us.  Giving us nasty looks.  Sighing and Humphing like he was beyond put out.  He was The Angry Man, as that's what we called him for the rest of the night.  His wife was embarrassed and at one point hissed at him, "Would you knock it off?  I'll explain later but just please stop."  He didn't get it and he didn't stop.  She just smiled apologetically.

I smiled back.

A putting green?!?  Awesome!

We lobbed balls and we missed more that we hit.  I may have ducked several times from flying clubs and I may have said, "OUCH, GAWD...Please don't use the club again to get my attention.  Clubbing shins is not OK."  I may have said that out loud while hobbling around limply.

There is something about giving your child, who has limited gross motor skills, basically a three foot metal arm extension called a golf club.  His range of motion/destruction is increased to about a five foot circumference around his entire body.  I think the only one who had more adrenaline coursing through their body than me, well, that was The Angry Man.  

I may have also said, "DUCCCCK" as a club or ball when flying several times....

And then we came home.  The Angry Man was forgotten.  And for once, I let someone else put the plugs of dirt/grass/mud back where they belonged.  I really would have liked to put them back but in my defense, some of them were lobbed so far out, they went further out than the balls.  I was not going to risk getting hit by a ball from The Angry Man.  He was just that pissed.

And as we left, Angry Man's wife gave me one last smile and a small wave.  In that split second our eyes connected there was understanding, kindness and compassion.  I smiled quickly back and went back to the kids.

Revenge is sweet though, I suspect when he got home, his wife was gave him a club or two of her own.  By the time we were through, she was even more pissed than her husband.  He was so mad at us he didn't see what was right under his nose.

His wife.        


Note: I have to tell you a little bit about how things went at school.  I was nervous as hell but it was AWESOME!  I'll post on Monday (with the PPT that I made into a booklet, so its available) but the big takeaway was the kids finally had a reason for his weirdness, if that makes any sense.  It was such a relief to see some of their faces---they understood why he chews his shirts, uses headsets, takes breaks or just flat out walks away.  They understood.    

Monday, October 1, 2012

Way back when...

I've had this thought rattling around the back corners of my mind for a while now.  It's been tenuous and sometimes hard to grasp.  Right when I think I have it figured out, it morphs into something else and slips just out of reach.

I wish I had the benefit of someone talking to me early on and telling me a little something about those first few years and what they would really be like.

As Alex gets older, it's becoming harder and harder to remember those younger years and in some ways that's a blessing.  Its easier to talk about them and with time they seem less raw.  Alex is almost nine now, and while we have difficult days, hours and sometimes whole stretches of time, for the most part, our challenges are more about how to deal with challenges.  How to deal with bullies, social situations or, understanding what a person meant and then what to do.

We're not in the grind of the early years when he was two and screaming over the TV channel being changed even though it was on static to begin with.  Or coping when he freaked-out in the car for some unknown reason three days running, only to make the connection that we weren't going the same way due to construction and maybe, just maybe, going a different way was throwing him off?

Wondering if we should go out to the store because we didn't tell him we were thinking of going out even though we were out of milk, eggs and everything else.  Having to kick people out of the house as nicely as we could because it was getting close to bedtime and they had to leave or all hell was going to break lose if they did not get the fuck out of the house in ten minutes.

Knowing friends looked at you weird because you couldn't interrupt nap time or go to Mc Donald's because, even at the tender age of three, he refused to walk under those golden arches.  Knowing some of those friends would never understand and they had to be let go and fade away.

And being jealous that other kids ate more than one food and they ate it willingly.  And then going back home to sneak the protein drink mix into his milk at night so he would gain weight, and having to do it in secret because you knew, just knew, if he saw you, he would no longer drink it.

Knowing that sometimes the people you thought you could lean on and would get it were the ones who understood things the least and were the first ones to shut the door in your face.  And knowing that sometimes your own family didn't understand and the reality was, they didn't want to understand.  And deep down, that hurt the most.

And while all that was going on you had to take care of yourself.  You had to try and figure out what was going on with your kid, go to appointments and listen in shocked silence as they told you something you kinda sorta already knew.  And it still stung like a thousand bee stings when they said it out loud and it crashed all around you.

Then, there was dealing with the diagnosis.  I mean really dealing with it.  At first it was a relief.  My first thought was, "By God, I'm not crazy."  I had so many people telling me he was fine, he was just a tish excitable, he just needed a firm hand or I need to learn how to discipline.  It took a long time for me to comprehend I was right about my child all along.  That was a hard lesson to learn and one I still wrestle with today.

I will never doubt what I think is right for my child again.

And dealing with insurance and more often than not, coming to grips with how little was covered and how every therapy fell into flex account spending or fell under the category of private pay.  Wrestling with having OT and PT and Speech come into the house and set up shop and numbly nodding your head that, "Yes, you could be available for six hours a week on such and such day and PECS?  That sounds great."  And not quite knowing what PECS even was.

And somehow we've moved past those early years.  And having lived them, I will tell you those were the hardest years for me.  Having to understand something I didn't yet have a grasp on.  I didn't understand Autism and I didn't understand my child.  I didn't know what triggered a meltdown and I didn't have the faintest understanding of how it all pieced together.  I was lost, confused and scared.  More often than not, I numbly went through the motions.

I can't say what the future will hold for you, but I can tell you it gets better.  It gets better because you have an understanding, a new knowledge of how your child works.  With a diagnosis, a lot will change.  Some people will fade away and others will be thrust into the forefront.  With that diagnosis you will be given the ability to better understand your child.  You will begin to know their quirks, strengths and weaknesses and what makes them run for the hills and what makes them laugh.

So I guess what I'm trying to say is, if your just starting out, it gets better.  With time, you will grow into the mom your child needs.  You won't even know it but you will.  You will start to see what matters most and what once was important becomes a mere annoyance or something that simply no longer fits in your life.  You will be what your child needs.

I'm not saying it will be easy, its not.  There are days you will fall into bed exhausted and then can't sleep from worry and the irony of that won't get past you.  What I am saying is this: you will make it.  You will make it out the other side to a place where you are comfortable in your own skin, comfortable with your decisions and comfortable with your child.

In time you will get there, trust me.  You will get there.  Surround yourself with those who understand and those who want to understand.  Give yourself time to grieve the loss of what you thought your child was and time to accept what you now know.  And know that deep down your child is no different from what he or she was a few days or a week ago.

It's not easy but you will get through.

I guess that's what I wished someone told me when we were first starting on this journey.

You will make it, your child will make it, and everything will be OK.  


Note:  I have a family member who has a child that was recently diagnosed.  This is for you, and those like you, who are just starting out going, "Now what do I do?"  I'm here if you need anything.  

Friday, September 28, 2012

Look who came back from the dead.

I must be feeling better because while I was out getting more pretzels for Alex, some dude cut me off in traffic and I immediately thought, "You stupid son-of-a-bitch."  At that moment I knew I'd come back from the dead.  Every single one of us have been sick in this house, probably with two or three different things, going on about three weeks now.

Alex was still not better after a week so we went to his doctor to check him out.  Autism and Asthma make a horrible combination and for a kid who can't tell me when he's going to puke, I hold out very little hope he can tell me if its hard to breathe.

Screw you people for jamming a q-tip down my throat.  

Turns out, we all have strep.  That would explain why my throat has been on FIRE, why I've been feverish and why I've been partly delusional, aside from my normal delusions of grandeur.

It's amazing what antibiotics can do.  Sure they're ripping through my gut like a tsunami but by God, I can breathe and for the first time in a solid week I can think clearly.  That right there, is better living through chemistry.  

Now I have to pick up the remnants of my house and get our lives back together.

I think I have:
  • 15 loads of laundry to do.
  • 8 missed therapies.
  • 2 missed groups.
  • 1 missed garden club for Alex.
  • 1 possible dead crab.
  • 2 dentist appointments, completely overlooked.
  • 6 toilets to scrub.

And I may have:
  • OD'ed three times on NyQuil by slugging it like a shot, screwing that little cup/dispenser thing on top.  
  • Found three abdominals I never knew I had, while coughing/puking at 10:00 PM and 2:00 AM, respectively. 
  • Wished I was dead 42 times. 
  • Cussed out about 8 dragons in DragonVale that have lead to major malfunctions in this house.  I'm looking at you, Equinox Dragon.  
  • And 1 sick husband. 

And don't worry, all the crabs are alive (damn-it) and turns out when you're sick you do make bad decisions so the trim on the house needs to be repainted.  You should have heard that foul language.

Aside from all of that, it's good to be back.


Friday, September 21, 2012

Seriously, take me out back and shoot me, would you?

Yeah, we're sick again.  Imagine that.  I don't know if my kids lick the floors at school, or french kiss the water fountain, but there it is.

I went to pick up Lizzy at school and the nurse said some kids have been out about four or five days.  Do you know what that means in our house?

Challenge Accepted.

Lizzy was out a week.  Alex has been out four days, so far.  I don't quite know when Gracie started getting sick but I started to pop Tylenol in her mouth when she started to gag, so she was covered.

We're in it to win it, that's all I can say.  In it to win it.

Alex has been sitting on a temp of 103 point holy shit that's hot.  He doesn't even realize he's sick and when he starts screaming, "My arm hurts, my arm hurts!" that's code for "I'm gonna hurl!"  

So far, his arm has hurt three times.  All over the car, missing the bucket entirely.  All over the driveway, nearly splatting a painter when they had a question that couldn't wait.  I guess he didn't hear me screaming, "Now's really not a good time for me!" and "Holy Shit!  Could you PLEASE try and AIM for the bucket.  Dear God, what did you eat?"

Yup. Nothing says back to school like airing out the car.  

Come to think of it, I don't remember seeing that particular painter again.  Remember how I mentioned we were starting on the exterior of the house?  Yeah, we've started.

And I don't exactly remember the third time he puked but Alex says it happened, so I believe him.

Somewhere in there, I've gotten sick so I've been toggling back and forth between Ibuprofen and Acetaminophen.  I don't even want to think about the war that's raging in my liver and kidneys right now.  I just keep thinking it could be worse, much worse, my husband could get sick.

The thing I've noticed with the kids being sick is just this:  my seven year old can articulate what hurts but my eight year old cannot.  Heck, even my two year old can point to her throat when I ask where it hurts.  Alex can't tell me that.  He can't say what hurts, where or even that he feels off.  He just can't put together all the pieces.  He's not there yet.

The only saving grace was that, this time Lizzy went down first so when he got sick, I knew what to look for.

But....but, when he gets sick, it's much worse.  He doesn't understand and he regresses.  I think he fundamentally understands something is wrong but he just doesn't know what.  Then, when your body's not doing what it should be doing, its grounds for some serious confusion.  And this is just me, but I think Alex gets sick longer and he tends to get the worst case of whatevers going around.

While Lizzy was laid up with a temp and sore throat, Alex has all of that, plus puking, plus hives and plus major adrenaline.  For two whole days he was one big hive.  Literally, his whole body was covered in hives and he couldn't stop itching.  The only thing that worked was to sit in a cool shower.  I won't tell you our water bill or how draining it is to keep an eight year old from scratching himself to a bloody pulp.  

And then, because they put the fear of God in the kids about lice at school, as soon as Alex started itching we had to do lice checks.  All The Time.  His head was itchy.  Itchy heads mean lice and because lice causes itchiness there had to be lice.  He was actually disappointed he wasn't growing a whole little nit farm on his head.

I was not.   

And he was bored.  He still is bored.  Good God All mighty, he's bored.  He's bored with NingaGo, How its Made, the computer and horror of all horrors, he's bored with his iTouch and the iPad.  And because he's bored, I get to hear about it, every twenty seconds.

Animusic.  Dear God, please make it stop.    

I have stopped being mom and have reverted back to being, "Hey waiter, I need more Gatorade."

I've become my child's manservant.

And I'm exhausted.  This is how I know having a child with Special Needs is a little more work, a little harder, a little more challenging.  I know it.  I live it.  It doesn't make him any less lovable.  Matter of fact, watching him while he's sick, and lose comprehension and understanding of the situation, rips my heart out.  But it does bring to light the difference between a child who has Special Needs and one who does not.

And now I have to go.  I think Gracie is puking.....again.  

Yup, that's what it was...


Note: the baby was up with a 104.oh shit, I'm scared fever, for most of yesterday and last night.  So if you're wondering where I've been, there's the answer.  I'll try to get to blogs as time arises.....I just didn't want you thinking I went *poof.*  All though, right now, that would be kinda nice....

Monday, September 17, 2012

I'm learning to live with Dragons in our house.

We have a new love in our house, it's iThing related.  Every love affair in this house is iThing related.  I lay the blame squarely at my husbands feet.  Usually when I go out for a bit and wonder the aisles of Walmart or Target for some alone time (don't judge me) he has to fend for himself with the kids.

His fending for himself involves a movie, the Wii or a new app/game on the iThing's.  They all have a good time and when I get back home, the house is reasonably unharmed so I go with it.  I've learned to pick my battles around here and if he's watching the kids, I don't raise a fuss unless there's a hole in the wall or a tent in the back yard.

Both of which have happened, don't ask.  

Anyway, when I came back from the store, my phone was whisked out of my hand and had DragonVale installed in a matter of seconds.  Seconds.

You smug little Wizard you.  

From that moment forward, I have had no peace.  None.  We've been talking about dragons all day, all night, all the time.

"Mom, did you see I have a Cold Dragon?  Lizzy doesn't have one.  Hey Lizzy, guess what kind of dragon I have?  I have a COLD DRAGON!"  Alex screams, happy as a clam he has a new dragon and mindless of the shit-storm Lizzy's going to unleash because she doesn't have a Cold Dragon.

"What?!  You have a Cold Dragon?!?  That's so not fair!  Mom, that's not fair!  I wanted a Cold Dragon!  That's not fair!!!" she wails, stomping around the house in a huff, bound and determined to make our lives miserable.

I would like to say it's stopped there.  It has not.  Lizzy's been bent out of shape ever since.

Until.

Until there was a promotion and DragonVale had this thing where you could enter and possibly receive a Sapphire Dragon.  The to die for dragon.  The dragon to beat all other dragons.

Long story short:  Lizzy got one, Alex did not.  I will save you the histrionics, meltdowns and furor that has been unleashed in this house.  Lizzy is good at payback and lets just say she's paid back, in full.

The Pandora's box of DragonVale.

Have I mentioned the fury/angst/horror that has been unleashed because Alex didn't get a Sapphire Dragon?  I have???  It bears repeating.  It's brought me to my knees.

I've had to write not one, but two letters, into school letting them know what's going on.  Something along the lines of:

"Alex is coming in to you very upset because he's not received the Sapphire Dragon in DragonVale.  I thought you should know so you can break him accordingly.  I don't know what DragonVale is either.  In other related news, tell Lizzy congrats."

I thought this was a one day event.  Lizzy got her dragon, end of story.

Not so.

Apparently the damn thing had to hatch.  See, in DragonVale they gave the eggs out as the promotion.  They still had to incubate and then the dragons hatch the next day.  

So I had to send in another letter, the next day:

"Another rough AM here.  Apparently the dragons of DragonVale need to hatch.  Lizzy's Sapphire Dragon hatched this AM sending Alex into another meltdown.  In other related news, I'm going insane and I hate dragons."

At one point I called my husband and it went a little something like this, "What in the fuck- fuck-fuck is DragonVale?  Wait, don't answer that.  Just tell me how we get Alex a Sapphire Dragon.  Can you gift it to him or something?  WAIT, WHAT?!?  IT COSTS $100!!!  Real America dollars?!?  Are you shitting me?!?   You have to fix this honey, I can't handle another morning like this."  

Yeah, turns out DragonVale was promoting these gems because they're fucking expensive.  The only way Alex could get the coveted dragon, was if I play and gift him gems. When he gets enough gems he can get a Sapphire Dragon.  

That was last week.

I've set strict limits on the kids iThings and we're somewhat back to normal.  Turns out, Alex was gifted another dragon as part of the promotion which is valuable in its own rights, so he's happy.

My very own Dragon Island.

The problem is, I've been sucked into DragonVale.  I've managed to get up to level 12 and I want the Sapphire Dragon.  Someone give me some gems would you?  I want that damn egg.

I gotta go, I have to pick which dragons I want to fight in the Colosseum.    

Friday, September 14, 2012

I'll make this easy. A crinoid is a fossil.


I'm always amazed at what comes home from school in my children's pockets, always amazed.  The kids have been back in school for a bit and I noticed something shake out of Alex's pocket when I was doing laundry. 

I should say, after I sent them through the washer and dryer.  When I went to pull out the lint trap, all the things fell down between the walls of the dryer.  With a hangar in one hand, and the vacuum attachment thing in the other, I started to fish the things out. 

Alex came up and started talking to my ass.  

"Mom, hey mom!  Have you seen my Crioids?  I brought three home from school.  I put them in my pants pocket on Friday and now I can't find them."

Why yes, they are 1/100th the size of a dime.  

"Ok, well hon, mommy's a little busy here.  Can you use your eyes and see what I'm doing?  Maybe we can talk in a few minutes?"  

You know, when you're not talking to my ass.  

"Alex hon, these things fell down into the dryer and I'm trying to fish them out.  Wait.  What did you call those things again?"  At this point, I was stuffed all the way in the dryer and it dawned on me that whatever he wanted, that's what was lodged between the walls of the dryer.  

"OK mom, talk later....but mom you have to clean the dryer vent every three months so you might as well do that now.  Did you know if you don't clean it, you'll have a greater risk of fire in your laundry tubing?  You should really clean that thing out while you're here.  You're doing a good job cleaning mom." 

All I could think of was, awesome social skills telling my ass I was doing a good job cleaning.  Sure he was talking directly to my rear end but whatever, he gave me a compliment.  

Anyway, something must have clicked in Alex's brain that I was fishing out his crinoids because all of a sudden my ass was getting yelled at.

"Oh My Gosh mom!!  You lost my crinoid in the washer!  Wait, no!!!  You lost it in the dryer...is that what you're getting out of the dryer?!?  Dear Lord in Heaven, you can't use the vacuum!  Aggghhh!!!  NOT THE VACUUM.   YOU MUST NOT SUCK UP MY CRINOIDS!!!!"

That was followed up by all sorts of gargling noises from Alex and me cussing after banging my head getting out of the dryer.  I finally got him calmed down over the vacuum, letting him know whatever we suck out of the dryer will be splayed out like an anatomy cat so we could collect his crinoids.  

The fear of the vacuum in our house is legendary.  LEGENDARY.  All I can say is vacuum plus Lego equal scarring traumatic life event.   

Anyway, we found one crinoid.  ONE.  He had three.  The other two were stuck in the walls of the dryer.  And news flash, that's where they're going to stay.

I found out while he's at recess, he likes to dig for fossils.  In the midst of all the kids running and playing, he digs.  There are a few other children that dig with him but for the most part he digs quietly by himself.  

A severe drought makes for one hell of a crinoid dig. 

And that's exactly why every night after school, for the past two weeks, we've been doing our own fossil dig.  We're looking for crinoids.  After the school settles down and all the kids go home, we slip back to the back corner of the playground and we dig.  

Silently.  Peacefully.  Next to each other.  Digging.  Every once in a while we shout, "Hey I got one!"  We share a quick smile and we slip right back into quiet.   

Our quiet.    



Monday, September 10, 2012

In which I talk about my GI system. At length. There's your warning.

I swear to God, I've been sick for the last week and I've narrowed it down to two things: Stress and a visit from my husband's aunt.  She traveled in from out of town and cooked for us.

That was last week.

I've been sick ever since.

Maybe it's a combination of being stressed and the visit, I don't know.  My stomach has been pushed right over the edge.  I've spent more time looking at the four walls of my bathroom and I've named the spider that's hanging out in the bottom right corner, next to my sink, Running bra.

That damn spider has set up shop next to the laundry pile and that one bra is just close enough, I'm not willing to touch it--the spider or the bra.  

Spider wins the battle and keeps the bra.

I know.  I'm not that creative to begin with but when you're losing half your body weight our your ass, the mind starts to shut down.  All creative thoughts are purged and the only thing I can think of is, "Oh My Fucking God, I think I have a tapeworm.  Can you get a tapeworm in today's day and age?  A parasite maybe?  Oh Jesus...I swear to be good, just please make this stop, I will never eat fried egg rolls again.  Oh God, I have to get the kids in a few minutes."

So that's what I've been doing this past week.  You know, besides picking out a whole exterior for the house and thinking of the different and varied ways to maim the kids that bullied Alex last week.

On the upside, I think I've dropped three pounds.

This would have nothing to do with my GI issues.
Nothing.  I'm sure of it.  

So yeah, I've been out of commission.

That and the kids are just not happy.  The change back to school is wearing thin.  I almost got my mouth sewn shut with toothpicks when I mentioned homework.

Homework.

That dirty little whore.  Alex has an on again, off again relationship with homework and right now we're in the OFF phase.  As in, I've had to call school and tell them we're not quite there yet and I'm sorry the 'All About Me' collage is really 'All About Lego's' and absolutely nothing about Alex, unless of course, you count that he is all about Lego's, then that would totally work.  Thank God his teachers are understanding and they're letting it slide.

So I'm trying to get back to a Monday, Wednesday, Friday posting but right now it's just not happening.

I'll be back to posting as soon as I get this tapeworm out of my system.      

Friday, September 7, 2012

When did we get so busy?!?

So the problem I'm having right now is life is getting in the way.  You would have thought that with school starting I'd have some free time.

Nope.

We've had some family drop in unexpectedly and a situation at school that I will post on later but not now.  Right now I just need to get through today and breathe.  While in theory those are small things, in reality they have blown up in our faces.  Because of that I've been a bit absent.

And because we're also working on this:

After one hail storm, three appraisers, one mitigator, arbitration, two contractors, three attorneys and eighteen months, we've finally been given the go ahead by a certain nameless insurance company to rip off the roof and start over.  Now we're in the process of picking a roof, garage doors, gutters/downspouts and exterior paint and trim.

Want a good way to freak out the kids in your family?  Make plans to rip off your roof.

I swear, the only saving grace with the drought in Kansas has been the fact we've not had any rain.  That was, until last week, when the remnants of Hurricane Isaac dumped three inches of much needed rainfall into our laundry room.

Right before the Irish Festival Lizzy was dancing in.  And right into the light fixture because well, why not?

To say Alex got the shit scared out of him when he turned on the light was an understatement.  "Mom!!!  MOM!!!  There is water coming from the light in the ceiling!!  Water and electricity don't mix!!  Mom, we're all gonna to die! Aggggghhh...."

He lost his mind and went on and on about the issues we were going to have with the house burning down, electrocution, and other untoward results from water dripping out of the light fixture.....

I just looked at my husband and said, "Fuck.  Flip the breaker, get a bucket and lets go."  Which is exactly what we did.

Minus our tickets to the Irish Festival.

And minus Alex's headsets.

In the midst of talk of electrocution and death by fire, getting dancing shoes, tackling the toddler and finding snacks and bug spray, I somehow managed to forget them.

Awesome.

Day one.  I'd like to think of the Irish Fest as more of an
endurance event....

So we got there and Lizzy danced her ass off.  She was awesome.  Gracie ate her weight in Cheeto's and Alex and I played War all the while discussing how a person could die from being electrocuted and all the finer points of an electrical current when it runs through human flesh.

Center Stage baby.


My girl was center stage.
And no, none of these girls are my baby. 

Yup, that's right.  We played a good old fashioned game of War in the middle of her dance routine.  In our defense, it was almost two hours long and was in 100 degree heat.

We sat through the whole thing playing cards and talking about death by electrocution.

Awesome.

And I couldn't have been prouder.  All the noise, crowds, heat and stress and he did great.  Sure, he turned into one big hive later that night, but he got through it that afternoon.

Day two.  

So while Lizzy danced, Gracie ate and Alex and I played, I looked around and came to a realization.  I may be busy, I may be stressed and I've had absolutely no to time to write but....life is good.

Life is good.

Now, anyone want to help decide on garage door and trim color?


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.

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.