Is it Autism? Yes.

I have three kids.  I don't talk too much on my blog about them because I feel like I should be sharing teaching tips and things.  Of course there is nothing wrong with bloggers sharing their personal life!  I enjoy reading about other people's lives, I've just always felt like mine isn't all that interesting. 

Well, except for Jack.  He's interesting.

My oldest and youngest kids are girls.  They are sweet and love to go to school.  They are great students.  They are a teacher's dream.  They're quiet and know all the answers.  They are polite and hard workers.  I've never had a teacher, or anyone, ever say anything negative about them.   They are "smiley" kids.  They get smiley faces on EVERYTHING.  They always get good grades and don't mind doing their homework, they even like to do it.  

But my son is different.  He always has been.  He's not a smiley kid.  I think he went his entire preschool experience without a smiley on hardly anything.  Very few smileys.  Just about every paper he brought home was a sad face.   Lots of sad faces.  Here are just a few I found in his memory box.

It was preschool, people.

I remember him taking his papers out of his folder once and saying, "I'm not good at school"

So, we would re-do the work and cross out the sad faces and make them happy.  It still makes me sad to see them.

 Things don't come easy for him.  He is and always has been a difficult kid, I admit it.  He made life tough.  When he was a baby, you had to bounce him…ALL THE TIME.  You couldn't surprise him.  He sobbed and banged his head on the floor during his 2nd birthday party.  He only calmed down when we let him be by himself.  You couldn't sing Happy Birthday or he would lose his mind.   He has always had obsessions, a specific toy, game, or show.   Potty training just didn't happen as a normal process.   He cried.  A LOT.   ALL THE TIME.

Looking back, it should have been clear.  I teach school.  I know things.   I read books.  I went to college.  I took him to doctors.  I took him to see all sorts of professionals. Is he Oppositional Defiant?  Is he bipolar?  Is it ADHD?  Is it autism?   What is wrong??
 I finally took him out of kindergarten after Christmas last school year.  The meltdowns, the shirt chewing, the refusals, the bathroom accidents....I documented every incident trying to get a handle on what was going on.  We tried ADHD meds but he had a severe neurological reaction.  His teacher was so hopeful.  Nope, not the fix.

We began again this year in Kindergarten and it has been better.  One of the biggest improvements is that I found a great therapist who listened to me and recognized my son's issues as being Autism.  

What?

But Jack isn't like any of the autistic kids I've taught.  He can't be on the spectrum.  I again focused my never-ending reading and research toward the spectrum and it all fell into place.  How could I have not made the connection earlier?  

If you've read anything about autism, then you've heard this expression: "If you've met one kid with autism, then you've met one kid with autism." 

He is high-functioning, if Asperger's hadn't been removed from the DSM-V, then he probably would have had that label.  I don't like labels.  I don't like the implication that my son can be judged before someone even meets him, or that they assume they already know what he is like.
BUT…
at the same time, I embrace the label because what my son deals with every day is REAL.  It isn't something he chooses. It isn't part of some master plan to drive everyone around him nuts.  He needs understanding.  He needs patience from the people around him (including me).  He needs accommodations.

I wince when I think back to how I treated him when I thought differently.  I cringe when I think back to the embarrassment I felt as I dragged him out of the lunchroom because he was under the table screaming because he couldn't stand to watch someone chew their food.  I tried everything.  I begged everyone to listen to me…there is something wrong.  Please tell me what to do.  Do I punish him?  Do I ignore behaviors?  I remember one of the psychologists saying, "just praise him and provide negative consequences for poor behavior"…I'm like, Duh.  I'm a teacher…that's what I do all day everyday. I know how to handle behavior in an Applied Behavior Analysis manner.   But people wouldn't understand.  Nothing worked.

The reason is that it wasn't behavior he could control. He was overloaded with sensory issues.  Yes, they are real.  He doesn't always get the understood social cues and "common knowledge" that most kids have.  He cannot pay attention to anything that isn't relevant to him.  And guess what?  School isn't relevant.  Naming letters and calling out sounds isn't relevant.  You know what is?  Dr Who.  That's relevant.   Minecraft.  That's relevant.    Skylanders, umm, yes, that's relevant.

It's been a long journey to get to where we are now.  It has been Dr visits, meetings, reading, researching, more Dr visits,  and me trying to create a bridge between learning and making it relevant to him.   This is one of the ways I make learning meaningful to him.  He chooses and places the stickers after he reads the sentence.  We re-read them each night and he tolerates it because they are Skylanders.  Notice that it is always the girl stickers that he doesn't like =)

 My heart breaks when I think about the way the world sees him.  I am devastated that they don't see him the way I see him.  I am torn to pieces when I see people not cut him any slack whatsoever and get angry with him and punish him for things and rules that he doesn't understand.  I shake my head in disbelief when he's allowed to sit in the corner and cry for 30 minutes instead of play.  No one seems to understand.  He has a reason for everything he does.  He just can't always tell you at that moment what it is.  Sometimes he just needs a break.  Just a moment to calm down.  Sometimes he just needs someone to let him have closure on an activity before he moves on to the next one.
There are ways I can make him talk and cooperate (no, not torture) but "ain't nobody got time for that" at school.  Except me.

I've worked really hard to try and come up with ideas and suggestions that will work in the classroom for him.  I've made token boards and bought things like visual timers to help…sent them free of charge.  I have documented what works.
I would love to say it has been great.  I would love to say teachers have used the suggestions.  I'd love to say we have it all figured out.

But I can't.

What I can say is that things are better than last year.  I can say Jack is making progress.  There are less sad and straight faces (on his daily conduct chart) this year.  I keep saying things are getting better, and they are.  I can also say that I've learned more by being his mom than in 17 years of teaching.  

With Jack at school, I feel it's as if someone who has asthma is having an attack and everyone around them is telling them, "Just breathe!"
If they could, they would.  But they CAN'T!  That's the whole point.
He can't.  He literally cannot handle the stress of transitions.  You can't change the schedule or he will meltdown.  You can't expect him to understand when you say, 'just a minute' but it takes 3.  And then he screams, "But you said just a MINUTE!!!"

My husband says it is difficult for adults to let go of control and accept that they might have to change their own behavior.  They think that if they make accommodations, then the kid wins.  The kid is being catered to while other kids have to live up to certain standards, this kid gets a free pass.  What I say to that is that my kid isn't like other kids.   Do you have any idea how much simpler my life would be if he was??  But he's not.  He isn't a "brat." He isn't being "bad" when he refuses to go to PE.   He is terribly misunderstood and needs people to take the time to help him work through his issues.

I now know what it's like to have "that kid"...you know, the one that everyone behind your back thinks is spoiled.  The kid that people think just needs a good spanking.  The kid who everyone stares at when he's having a meltdown.  I now know what it's like to have the kid who struggles to get a passing grade.  The kid who doesn't love school and can't sit still.  He struggles with transitions, lunchroom, PE, and anything that isn't part of his routine.  He is hyper-focused on Dr Who, Minecraft, and Skylanders.  He can talk your ear off about those things, but won't sit with other kids during lunch or carpet time.  Homework takes FOREVER and isn't fun for either of us.  Every day is a ritual of scripts and preparing him for every possible thing that might be different.   He is contrary and not in any way agreeable or easy going.  The world stresses him out.
I have "that kid" and I'm sorry, I wouldn't trade him for anything.

 I do get tired though...

of everyone seeming to focus on what he can't do and what he won't do.  

I wish they could focus instead on what he CAN do.  He's not some boring, cookie-cutter kid like everyone else.  He's passionate about the things that interest him.   You can ask him anything about his special interests and he can tell you whatever you want to know.
He isn't like other kids, but in a good way.  He sees things differently...he's interesting.  He's gifted at computers.  He's sweet and funny.  He's quirky.  He's one of the most important people in my life.
He's my baby.

He's smart and makes connections that I would never make on my own.  He's just a little different, like I said, in a good way.  He's good at monkey bars and loves to hang upside down.

But then the rest of the world comes back into focus.  

I was told just last week that "when he's in a 'good mood' he's fine".

It's not a mood.
"Autism is the result of a neurological disorder that has an effect on normal brain function, affecting development of the person's communication and social interaction skills." 

You have no idea.
He struggles every day to make it through the day, every day.  It is a constant battle for him to keep it together.  We have exhausted every avenue open to us to try and get him help.  

I don't think anyone appreciates him enough, but then, I am partial because I'm his mom.