Uncomfortable Truth

My well-meaning husband linked this blog-in-progress to his Facebook page without my permission.  I was livid when I saw it.  I immediately called him up and quietly asked for his password.  He could tell I was angry because I didn't raise my voice even a little.

"OK.  Why?"
"Because you linked to my blog and I didn't want you to.  I wanted it to be private."
"You didn't tell me that.  Why write a blog if you don't want anyone to see it?"

Why, indeed?  I wanted people to see it, just not anyone I know.  I liked the idea of venting to the universe, bitching about my problems in a way that might be seen by many or none.  I figured if I didn't tell anyone about the blog, the only people who would see if would be people who found it by accident.  They'd either read it or pass it by, and it wouldn't matter.  Maybe a stranger would read it and it would strike a chord and that would be really, really great.

Because the thing is, I don't want my friends to know how much I resent them sometimes.

My friends, who send us lovely Christmas cards, with all of their children looking into the camera.

My friends, who complain when their child has an ear infection.  Yes, ear infections hurt and they suck.  I get it.  But you know what cures an ear infection?  Penicillin.  You know what cures autism?  Fuck all.


My friends, who watch TV at night, or read, or exercise, or, I dunno, sleep.

My friends, who don't have to lock their fridges and pantries and doors, because their children don't get up at night and butter the couch.  (Yes.  As God is my witness, the boy has buttered the couch on more than one occasion.)

There's so much that parents of typical kids take for granted, and on bad days, I can hate them for it.  I hate when they complain and I hate when they sympathize.  They'll say, "I know I shouldn't even say anything, because you have it way worse, but..."

And I hate them for that, too.

It's not fair or rational, I know.  But it's how I feel sometimes.  I resent people I really like, and I don't want them to know about it.  So my husband removed the link months ago, and I'm just getting around to posting this.  Hopefully, the people we know have forgotten that my effin' autism blog even exists.

Squeaky Wheel

The boy is in his third year of special needs pre-K.  (He's a November baby and so he aged out of Early Intervention with almost an entire school to go.)  In previous years, we'd get lovely reports from his teachers.  So happy!  So charming!  What a sweetheart!

The boy is in a decidedly un-charming phase.

I'm starting to think that's a good thing.  You see, when he wasn't a problem, we weren't getting a lot of input as to how to help him.  Now that he's being a royal pain in the ass, his teachers, therapists, doctors, and parents are being really proactive. 

Today, the boy had a victory!  We all had a victory!

He's been hitting and pinching when he's frustrated and not getting his way.  When he gets angry, his teacher prompts him with a picture of an "angry face" and cues him to say, "I'm mad."  Then she asks him to tell her what he wants, and he eventually calms down and uses his words.

Well, today was a big day!  During circle time, the boy grabbed his teacher's hand and was about to pinch, when he stopped himself.  He let go of her hand, looked her in the face, and said, "I'm mad."

"Why are you mad?"

"I want the monkey book."

"OK, you can work for it during work time."

And that was it!  He accepted that and returned to the circle.  He didn't hulk out or throw a fit or anything.  And he did it all without prompting.

A miracle.

If you a parent of a child on the spectrum, you understand what a big deal this is.  If you are not, you probably feel sorry for me.  Don't.  It's been a good day.

God Had Nothing To Do With This

Sometimes, well-meaning people try to give our situation a cosmic perspective.  They point out how our older son has learned so much and become such a caring and responsible child as a result of our younger boy's autism.

"He's so good with his brother.  So patient and kind.  He wouldn't be the same if his brother were different."

It's a nice idea, but I'd like to think we'd be capable of raising a caring and responsible child without this fucking albatross that is autism.  Whatever.

Sometimes, they try to ascribe certain characteristics to our boy that are a stretch, at best.

"He's an angel."
"He's a gentle giant."

If you've read my previous post, you'd know the score on that.

But the thing that really gets me is this platitude:  "God gave you the child He knew you could handle."

OK, I know this is intended to pay some amazing compliment.  It suggests that my husband and I are superhero parents and God looked down and said, "Give him to them.  They will know what to do."

Here's the problem:  He's fucking GOD.  If he can control everything, why give a kid autism in the first place?

I refuse to believe that God, if He exists, gave my child autism to prove to the world what a rock-star I am.   That's just douche-baggery.

I'd like to think that God is not a douche bag.

If I've pissed you off, I don't have time to apologize.  The boy just dumped cereal on the dog.

 

"Quiet Hands"

My son hit a baby in the childcare room at the gym.  I knew something was wrong by the quiet way one of the office people approached me on the elliptical.  A director was sitting outside the playroom with him, and my boy had no sense that anything was wrong.

When he saw me, his face lit up and he said, "Mommy!  Wanna go on the swings!"

No swings for him.  We've talked about this.  Very recently, he's gotten "aggressive."  He will pinch and hit me if I don't give him what he wants and will push other children for no reason.  He'll even say, "No pushing!  Pushing is bad!" as he pushes someone.

This is not the boy I know.  The boy I know might not listen, might laugh at you when you tell him to do something, but he is a sweetheart who would never hurt anybody.

Except he did.  I could hear the baby crying in the playroom as the mother emerged to say there was no calming him down and she was just going to take him home.  I felt awful.  She was just another drained mom who wanted an hour to herself.  I tried to apologize, but I could barely get the words out for fear of crying and she could barely look at me.  Who could blame her?  What do you say to the mother of a giant four year-old who's just hit your baby?

He was wearing his "Peace, Love and Autism" shirt.  Irony of ironies.

It's not just the embarrassment or the fact that I don't get an hour to myself, either.  What really breaks my heart is that my son doesn't seem to understand that hitting is wrong.  He sees the kid crying and it doesn't affect him.  He sees me crying and it doesn't affect him.

"Mommy's crying," he observed.
"Yes, Mommy is crying because hitting is bad," I replied.  "Hitting makes Mommy sad."
Then he smacked me in the face.

Reading this, you would think I have some kind of spoiled monster on my hands.  That's not him at all.  My son is sweet and affectionate and loves to cuddle.  I don't know where he went.  I've tried all the cue words from school, the "quiet hands," modeling appropriate behavior, time-outs, consequences, and nothing seems to stop him.

After a good cry, I resolved to call his doctor in the morning.  We need help.

"Have you explained...?"

My four year-old ran out onto the field during his big brother's baseball game tonight.  It caused some commotion as we called "time" and my husband had to go after him.  After much zigging and zagging, my husband snatched him up and carried him off the field in a fireman's carry.  Some of the other coaches were joking around about it, but the episode bothered me.

"Do the other guys know?  Have you explained...?" I whispered to my husband.  He shook his head.
"I will," he promised.

A big part of being the parent of a child with autism is having to explain your child's condition to others.  My son is still young, so sometimes it's not immediately obvious that he has a developmental disability.  He just seems like a bit of a lunatic, and my husband and I look like slacker parents.

I often dread the explaining bit because I hate the pity looks.  Don't get me wrong--most people do a decent job of covering.  Say my son walks up to an acquaintance at a school concert and smells her, I say, "Sorry.  He has autism, so he doesn't always understand boundaries."  The woman's face will freeze into an expression that is trying desperately to mask a reaction.  Then the she will respond, "Okay?" like it's a question.  Those are good people.  I know they don't know how to act, and they're doing their best.

The people who truly bother me are the ones who cry, "Oh, no!  I'm so sorry!"  Maybe they mean well, but autism isn't a tragedy.  It's a pain in the ass and it's unfair and I wish it would go away, but c'mon.

Then there are the people who, upon hearing that my son has autism, reply, "Oh!  So does my son/daughter!"  And we are instantly friends.

I should clarify that I don't really care what people think of me.  If they don't like my parenting, they can stick it.  But my boy...I want people to understand him.  He's amazing.