Go the Eff to Sleep: Stuff We've Tried That Worked for a Little While

We're tweaking his meds again.  He's not sleeping.  It's a cycle.  We see his developmental pediatrician--a wonderful woman who actually listens and understands that three hours of sleep a night is not sustainable--and she tries to fix it for us.  She changes up his meds and he sleeps well for a couple of weeks.  Then we're back to the midnight madness.  This time, she's ordered a EEG and a sleep study so we can get a better idea of what the eff is going on.

I'm going to stab my eyes out with these knitting needles.

We've tried it all.  Here's a list, in no particular order:

1.  Melatonin as a verb.  It is a verb in our house.  An active verb:  Did you melatone him?  A passive verb:  Has he been melatoned?  The answer is yes, and it doesn't friggin' matter.  It does nothing for him anymore.  (Knocks me on my ass, though.)

2.  Meds.  Clonidine, Tenex, Risperdal.  As I mentioned before, they work for a little while and then quit.  My husband and I try to squeeze all our movie-watching into those few days.

3.  Sleep CDs.  We once burned out a cd player playing Sleeping Through the Rain on repeat all night for months on end.  Don't think the boy noticed, but it worked really well on me, which is why I will never go to one of those hypnotist shows.  I'd be that crazy bitch on stage clucking like a chicken and then denying it later.

4.  Driving around in the middle of the night.  When the boy was still light enough to carry from the car without waking, I'd take him on drives.  I once came upon an animal convention in the middle of the road.  I swear, there was a deer, a raccoon, a possum, and a rabbit, and I think they were discussing something important before I interrupted them.

5.  Epsom salts baths.  This is a cheap solution, and if he drinks the bathwater, it's a natural laxative.  Our local store stopped stocking the plain kind, so we tried the chamomile and lavender salts, which made the boy smell like my Aunt Agnes.

6.  My nightshirts.  For two glorious nights in a row, the boy brought one of my nightshirts to bed with him and slept all the way through.  He likes my nightshirts because they all have cartoon characters on them.  (How does my husband resist me?  I have no idea.)  I think he was reassured by the Mommy smell.  For two nights at least.

7.  Videos.  Good Night, Gorilla.  Good Night, Moon.  Raffi.  You name it, we've tried it.

8.  Grandma's House.  Every once in a while, my in-laws will take pity on us, and take our kids overnight.  (Those nights are the best because we sleep like it's our job.  We pull down the shades, take some Tylenol PM, and it's Enter Sandman.  We take this opportunity seriously.)  Then we find out the next day that the boy slept just fine.  I'm convinced my mother-in-law is some kind of white witch.  Or maybe it's their Tempurpedic mattress.

So...whatcha got?

There's Always a Full Moon in Autism Land!

Holy effin' ess.  Holy.  Effin'. Ess.

Things have gotten especially weird here.  Just when we think we're making progress, the boy loses his effin' mind and is baying at the moon.  

Blame it on the moon.

The old problems are back.  Obsessing over a ratty shirt.  Not sleeping.  Getting clingy during therapy.  And now...bedwetting!  (He's been dry at night for over a year, and now this?!)

The boy didn't just wet any bed.  He wet our bed.  And he didn't just wet it--he hosed that mother down.  We're not sure how he did it, really.  So we moved him to his bed, changed the sheets, and went to sleep...for a few hours.  Then, at three o'clock this morning, he woke up raring to go, and demanded the damn Phineas and Ferb shirt.  Then he wanted cereal.  And juice.  And a video.  And when none of that satisfied him, he decided that everyone needed to be up with him.  So he jumped on his brother, turned on all the lights, and dumped chocolate milk on our newly-changed sheets.

He kept this up until it was time to leave for school.  Then he sat down on the toilet and peed all over the front of THE shirt.  So I made him change, which caused a hysterical scene of crying, screaming, and running shirtless out of the house.  I am the meanest mommy ever.

(I mainlined coffee all day at work.  I'm pretty sure nothing I said made any sense, but that's ok because I teach middle school, and they don't understand sense.) 

We arrived home from school, and were hit with the stench of piss and God-knows-what-else when we opened the door.  While vacuuming and febrezing madly, I noticed a brown stain on our long, gauzy curtains, and I knew the awful truth before I even took a sniff...

The boy had used our bedroom curtains to wipe his ass.

And that, Gentle Reader, is when I started to cry.  This time it was poop, and it was just too much.

I don't think it's just me or just my kid.  It seems that many of my ASD-parent friends (including all y'all I've met online) are reporting that their children, too, are going stark raving mad.  I mean, we're a resilient bunch, so if our kids are acting wacky enough to worry us, something is going on.

There is a full moon tonight.  Is there something to that?  Maybe things will calm down tomorrow and it'll be smooth sailing...until May 25th!

Autism Superpower

I could write a book about the dumb-ass things that nice people say.  Or the thoughtful questions they ask.

Can trash a room in no time flat.

"So...what's he into?" they ask.
"Oh, you know...Mr. Potato Head, Play-doh, messy stuff."
"Yeah, but what's his thing?  Like, what is he really good at?"

Oh, you mean the Autism Superpower?

That's exactly what they mean.  People see my kid stimming his face off on a tire swing and think he can count cards at a casino.  Or maybe he's a secret piano prodigy.  They see his wacked-out hair and ask if he's an artist.  Yeah, he's an effin' artist.  His favorite media are poop and toothpaste.

My son is good at a lot of things.  He can make us laugh.  He can make us drink.  He can make us appreciate every achievement, no matter how small.  He can keep us up at all fuckin' hours with demands for cereal and Handy Manny.  We're pretty sure he can pick locks.

Can't it be enough that our son can finally, at age five, tell people his name if they ask?  Or say what he likes to eat?  (His first response to this social question was "food."  He's since gotten more specific, which is impressive.  Incidentally, an ASD kid liking "food" to eat as opposed to something else is also impressive.)  He's worked so hard just to learn to point, people!  And you want him composing an opera?

I think they think that if my son has a special gift, then they don't have to feel bad about autism.  It's easier for them to take.  It's a comfort to think, Yeah, her kid has autism, but in a few years, he's going to invent something better than Twinkies or Paypal, and then she'll be set. 

Maybe he will.  Maybe he won't.  And if my kid develops a special talent, I will shout it from the rooftops.

But right now, I'd settle for him wiping his own ass.  That's an effin' superpower.  I'll make him a cape if he pulls that off.

Sunshine on my shoulders makes me happy. Skid marks on my bedspread make me cry.

"POOPING!!!!" shouts a voice down the hall.
My husband and I freeze.  Is he actually telling us that he's pooping?  I run into the bathroom to find the boy sitting on the toilet with a big grin on his face.
"Did you poop?" I ask.

TP--it's not just for playtime anymore.

"Pooped!" he replies.  I look.  He did.  It's huge.
"Good job telling Mommy!"  I congratulate him and pick up a wet wipe.
"Bend over," he says, before I can tell him.  I wipe him, we wash hands, and we celebrate.

Flush!

We are celebrating that my son did not attempt to wipe with his bare hands and smear it on his legs.  We are also celebrating that he didn't skip wiping all together and then sit bare-assed on the couch, the piano keys, or our bed--like he did yesterday.

We've slept in many a skid mark.  I know it's gross.  There have been times that we've been too tired to notice.

Poop or chocolate?  Poop or chocolate?  Oh, God help me, it's poop.

I know parents of toddlers who've said those words.  We say them often.  Our son is five.

It's gotten to the point where we're cool with any crisis as long as it doesn't involve poop.  It's become our motto.

"He smeared toothpaste on the mirror."
"At least it's not poop."
"He stuck play-doh in the carpet."
"At least it's not poop."
"He's throwing a tantrum."
"At least he's not throwing poop."

Poop is an important topic for parents of ASD kids. 
Seriously...google "autism and poop."  Your computer will blow up.

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.