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.


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....


"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 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.


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 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 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 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.