Zen and the Art of Oversharing: How You and This Effin' Blog Saved Me

A year ago, I felt exhausted, pissed off, and alone.

The boy wasn't sleeping, he was having behavior problems at school, and some potty-training relapses.  Every afternoon, I would anxiously open the communication book, silently praying for good news.  My stomach would twist in a knot when there wasn't any.  I spent my evenings cleaning poop, my nights in a groggy purgatory between sleeping and waking, and my days fueled with crazy amounts of caffeine.  Our speech therapist broke up with us, our occupational therapist was out-of-network, and the bills were mounting.  I was an angry, twitchy stress-ball.

And nobody had any idea.

Surrounded by well-meaning people who didn't understand our situation, I put on a brave face and acted like everything was fine.  I was complimented about my "great attitude" and told that God must have chosen us for this special assignment.

"I don't know how you do it!" they'd say.

"I don't do it!" I wanted to shout.  "I'm hanging on by a fucking thread and it's all I can do not to scream at you for your seven hours of sleep and your normal-people problems!"

Good, good people would give me books about Temple Grandin, and instead of feeling grateful, I wanted to throw them at their heads.  You know, that's really great that she's this brilliant scientist/researcher/professor, but my kid can't wipe his ass, I'd think to myself.  I wasn't ready for Temple Grandin.  I still don't think I'm ready for Temple Grandin.  (With all due respect to Dr. Grandin...but we're still in triage mode most of the time.)

Meanwhile, I had this secret little blog that I would write when I felt frustrated or worried and confused.  I didn't show it to anyone.  I wanted it to be a place where I could yell at the world without worrying that the world might yell back.  I vented, but it did nothing to make me feel better.

Another Pleasant Valley Sunday...

Then one day, I read a post by Autism Daddy that sounded so familiar, so like my own feelings, that I took a risk and put a link to one of my posts in the comments.  A stranger on the thread read it and messaged me to tell me that she liked what I wrote and felt the same way.  She sent me a friend request.  I accepted.  This was the first time I'd ever accepted a request from someone I didn't know in real life, but as we exchanged short but important messages, I felt like I DID know her.  (Yes, Amy.  It's you!)

Then I discovered Autism with a Side of Fries, and that settled it.  I had to "come out."  Here was a woman who was somehow inside my head, and being a Jersey Girl, she even sounded like me!  And she was telling her story and she was funny and honest and I thought, I bet that feels good.  So I showed her my blog, and she showed Fry Nation, and the rest, as they say, is...

...Where the story really begins--when I found my people.  When I found people who didn't wrinkle their noses and say, "Oh, really?" when I mentioned some simple term, like "fecal smearing."  No nose-wrinkling here!  Just head-nodding!  Just, hell-yeah-me-too-poop-is-everywhere-but-what-can-ya-do-right?

I wrote about poop and people didn't act like I was pathetic.  I wrote about sleeplessness and nobody suggested we try a "bedtime routine."  I wrote about the full moon, and instead of telling me that I was being superstitious, people said, "My kid, too."

I realized that if you get enough of the right people together, our wildly stressful, insanely funny, batshit-crazy existence can seem kind of normal.  Our normal.

It was the best feeling in the world.  I finally found people who understood, and I'm so, so grateful.

Finding these friends hasn't fixed anything, but it's changed everything.  My kid still has sleep problems.  My kid still has behavioral issues.  My kid still has ass-wiping difficulties.  Autism isn't going anywhere...but now I'm not going at this alone.

How can I show my appreciation for all the support I've found this year?  How can I tell you that you are more effective than a therapist and a helluva lot cheaper?  I couldn't come up with a poem to express how much you all mean to me, so I'm going to leave you with the words of my favorite modern American philosopher:

There's not a word yet
For old friends who just met.
--Gonzo the Great

Peace.

How to Stay Married on Two Hours of Sleep

Note:  I am a caring nurturer, a member of an online support group, but not a licensed therapist.

Friends sometimes ask how we do it.  With all the stress and pressure and lack of sleep, how do we make our marriage work?  When asked this question, I smile and take another sip of coffee and say, "Sorry, I spaced out for a bit there.  What was the question?"

The truth is we fuck up all the time.  Hopefully, we learn from it, and find new and inventive ways of fucking up.

The sleep issue goes way back.  One of the first major meltdowns we had over sleep was when our older son was a newborn.  My husband is a very heavy sleeper--nothing bothers him.  I, on the other hand, wake up when a moth farts on a tree outside.

One particularly awful winter night, the baby was crying and crying and I tried everything to calm him down.  Diaper.  Bottle.  Swaddle.  Unswaddle.  Rocking, singing, and pacing the floor.  Nothing worked.  I was reaching the end of my patience when I remembered the words of the nurse: "No baby ever died from crying."  I needed a break.  I put him down in his crib and went to my husband for back-up.

"I need your help.  He won't stop crying," I said.  My husband continued snoring.
"Please, wake up!" I begged.  I shook him.  "I need help!  He won't stop crying!"
"All right!  All right!" he yelled, and rolled over and put the pillow over his head.  Meanwhile, the baby continued wailing from the other room.

I was furious.  I decided I was going to dump a bucket of ice water on the bastard if he didn't get up.

"WAKE UP!" I yelled.  He kept sleeping.  Fine, then.  Ice water it is.  I grabbed hold of the doorknob and yanked the door of our bedroom open, only to discover that the hinges were loose.  The door came out of the frame and landed on the top of my bare foot.

"OWWWW!" I shrieked, and let go of the door.  There was this huge BAM! as the door went crashing to the ground, the baby cried louder, and I hopped up and down on one foot, cursing and crying.  My husband didn't stir.

"WAKE. THE FUCK. UP!"  I grabbed the first thing I could find--a water bottle--and hurled it, not at him, but at the window next to him.  The glass, which was not double-paned, shattered.  January wind and snow gusted into the room.

My husband stirred a bit and opened one eye.  "Did you open a window?"  he asked.

"No, I broke the window, and the door, and if you don't get up, you're next!"

     *     *     *

We've gotten better since then.

Still, it's hard.  We both work outside the home, so there's no opportunity to nap during the day.  And as hard as it is to care for a sleepless newborn, at least they're not mobile.  They don't wake up and jump on the dog.  They don't butter the couch and cover themselves with every bandaid in the house.  They don't climb the furniture, break lamps, or go outside to fetch handfuls of snow to put in our bed.  Sleepless ASD kids are just harder, and it's too easy to get exhausted and angry, but we do our best.  My husband and I have guidelines that we try to follow, and we're both guilty of violating them.  I'm here to share our "wisdom" (whaa-whaa-whaa) with you.

1.  Take turns. Duh, but a lot of people don't.  The key here is to have shifts.  It makes no sense for you both to be popping out of bed every 15 minutes.  Try to have shifts so that each person isn't on duty all night, and you both can have some sleep.  We generally do two-hour blocks.  Any more than that can be scary.

2.  Work out the schedule ahead of time.  We hardly ever do this, but it works when we do.  For example, last night I knew it was all on me.  My husband had to get up early this morning, and we have no school, so it was my job.  (Last night was so effin' miserable that I've already told my husband that tonight I'm taking two Tylenol PMs and going on soma holiday.)

3.  When you're on duty, protect the sleep of your partner.  Besides keeping your kid safe, that's the most important thing you can do.  Who's going to relieve you when you're burnt out?  Close the bedroom door and take the noisy kid somewhere else.

4.  Don't be a fucking martyr.  When it's your turn, and you hear a noise, get up and take care of it.  Don't throw the covers back in a melodramatic fashion and go stomping out of the bedroom.  (See Rule #3)  Don't come back in the bedroom and rant about whatever the kid is doing wrong.  It's your turn.  Don't grumble about how hard your life is.  You both live in the same house.

5.  Ask for help when you need it.  Sometimes patience runs out before your shift does, and you need help.  Sometimes you walk into a perfect storm of smeared poop, maple syrup, and dog vomit.  When these things happen, and you're going to lose it, ask for help.  And Sleeper?  Get up.  This is an emergency.  (See Rule #4) 

6.  Say "Thank You."  It's really important.  I cannot overstate this.

When things go well, we can laugh about his exploits the next day.  When they don't, we know we're in this together.  We pour the coffee and hug it out and hope for a better night soon.

Autism Travel Log: Philadelphia, the City of Brotherly Shove--Part 2

This is the continuing story of a somewhat hellacious weekend trip with the family that I began here.

Yes!  We arrived at the hotel and found my husband, looking clean-shaven and dapper, waiting for us.  The boys ran up to him as if he were the hero they were waiting for.  Daddy, Daddy!  It's Daddy!  Hey, Dad!  Dad's here!  Mommy, who had driven them, put up with them, and bought them food, was forgotten.  I didn't care, because I was thinking, He's here!  He's here!  Thank God!  Maybe he has a glass of wine for me!

Peep Show!

We brought our stuff up to the room, and I immediately noticed a problem.  The window in our room
faced into the atrium of the hotel.  For some people, such an arrangement would be weird or a little cool, but for the mother of a perpetually naked child, it was going to be a challenge.  I mean, he might as well hang a picture frame from his waist and announce, "Conventioneers and members of the wedding!  Behold my junk!"

We were going to have to keep clothes on him.

But first, the pool!  Yes, let's chill these whiners out with a dip in the indoor pool.  Oh, what an idea!  They were happy for the first time all day.  Please don't splash Mommy.  I just had my roots done.  Do you think brown hair just grows out of your head?

My husband's ONE JOB in planning this whole trip was to find a restaurant for dinner.  He's a chef, a foodie, and is great at finding just the right place.  He knows our requirements.  Any restaurant we go to must serve french fries, ice cream, and chocolate milk.  The restaurant is preferably a little noisy, so we don't disturb other diners, and has booth seating, so we can keep the boy in a seat.  Unbeknownst to me, my husband must have taken up crack-smoking, because he made a reservation at a charming and quiet English pub, with no children's menu, no milk or apple juice, and no ice cream.  The seats were short stools.  It was a disaster.

"I wanna go to Pennsylvania!" the boy cried.  Me, too, buddy.  Me, too.

We went down the street to the Franklin Fountain, a really cool old-fashioned ice cream shop.  They housed their giant sundaes.  They were happy for the second time all day.

We returned to "Pennsylvania", which is the boy's word for the hotel, with the hope that he was worn out enough to sleep.  No such luck, alas.  He refused to settle down.  First, he wanted to sleep with his brother.  Then he decided it would be more fun to shove him off the bed.  So I made him lie down with me.  I scratched his back, and just as I thought he was drifting off, he stood up and took a flying leap onto the other bed where my husband and Big Bro were sleeping, and kneed my husband in the pills with all his weight.

I settled him down again, and must have fallen asleep for a bit, because I woke up to him shaking me and saying, "Take it out, Mommy.  Take it out, please."

"Take what out?" I asked.  He responded by shoving my fingers in his mouth.  He wanted me to pull out his tooth.

"I'm not doing it, dude." I murmured, and fell asleep for real.  I awoke in predawn hours to the sound of the boy singing.

"Peanut butter...we love peanut butter!"  I opened one eye, and felt around on the bed for him.  I found a bloody tooth, but no boy.

"Peanut butter!  That's what we like best!"   Where was he?  Not in the other bed.  Not in the bathroom.  But then where...?

"Do you like it on your head?  Yes, we like it on our head!"  I followed the sound of his voice to the curtains, and saw two bare feet between the curtain and the window.

Oh, God.  No...

Oh, yes.  There he was, butt-naked and singing, pressing his genitals against the window in full view of a very resigned-looking janitor who was vacuuming below.  The boy turned to me and grinned, his glasses and missing tooth making him look like a deranged jack-o-lantern, and continued his song.

"On your head?  On our head!  OHHHH!"

And that was just the first night.

Eff You For Not Suffering With Me

There's lots of talk of resentment in our community.  It makes sense.  We see our children struggle with something that has no known cause or cure.  We resent our NT friends for getting to take naps.  We resent ignorant people who suggest that autism can be fixed with a "good spanking."  We resent each other for suggesting that we're doing it wrong--wrong diet, wrong shots, wrong therapy.  And we resent insurance companies for refusing to cover any of the above.

We're a sensitive bunch.  So it gets even tougher when the resentment hits closer to home.  As in, it hits in our home.

My husband and I handle this pretty well.  We have a running joke.  We tell each other to fuck off.  It's nice.  If he's at home with the boys, and things aren't going so well, I might get a text that reads, "He dumped an entire box of cereal on the couch, but it's under control.  Enjoy your cocktails.  Fuck you!  Love you!"

Such fun!

Because of the nature of my husband's job, I'm more likely to send the "fuck you" texts.  He travels and has to stay overnight at least once a week.  He says it's boring, but I'm jealous.  I've never stayed in a hotel room by myself.  It seems like an extraordinary luxury.  You mean I don't have to go looking for quiet?  Quiet is already here?! 

My husband was in Boston last week for work, and I was getting the house ready for the ABA therapist.  As I was putting the cushions back on the couch (again!) I became aware of a poop smell.  I looked up to see a naked, shit-smeared boy.  He was going to need a shower pronto.  But before I could stop him, he jumped on the couch.  Now the couch was going to need cleaning, too.  I got him into the tub, and as I was soaping and scrubbing and cursing under my breath, I could hear the ding-ding of my cell phone.  A text.  I ignored it, dressed the boy, handed him over to the therapist, and went about getting the skid mark off the couch.  Ding-ding!  What now?

A picture is worth a thousand f-bombs.

I washed the turd remnants from my hands and picked up the phone.  It was a message from my husband!  His company set him up in a much nicer hotel this time!  He sent a picture!

My response:  "The boy just shit somewhere and smeared it all over himself.  Had to wash him and the couch.  Fuck you and your fancy hotel room.  xoxo"

And I was kidding.  Mostly.

But it's hard not to get resentful.  I know he'd rather be home.  I do.  I also know that I'd rather he be home, too, so I could be in a hotel room.

He's away again today.  We had a doctor's appointment with the sleep specialist and I couldn't find the paperwork.  I was in an effin' rage because my husband cleaned the kitchen and moved the papers.  Let me repeat:  My husband cleaned the kitchen, which he does every night.  He also made dinner and dealt with a serious Code Brown.  This man is the best.  He's a great husband and a great father, but I was pissed at him anyway, because he had to work.

It doesn't make any sense.

On the way to the doctor, the kids were shoving each other and whining and moaning.  The boy announced that he had to go potty and promptly began shrieking.  What the--?   I pulled over and discovered that he had loosened his shoulder belt and wrapped it around his foot.  When the seatbelt tightened, it pulled his leg up over his head like he was in traction.  He was stuck and screaming and the three of us were yanking and yelling and causing a major scene, until we eventually pulled him free, at which point he peed on the side of the road, bitching all the while.

Was I angry at the boy for messing with his seat belt?  No!  I was angry at my husband for not being there to suffer along with me.

It doesn't make any sense.

When we finally arrived at the hospital, I was so exhausted, I almost cried.  I was sorely hoping this sleep specialist could give us some answers.  I'd been up since four with the boy.  One problem, though.  The hospital screwed up.  They made our appointment with the wrong effin' doctor!  We have to go back on Thursday at 6 pm--an appointment my husband can make.

Which is what he wanted all along.

 

The Effin' Sheep Movie Story, or Fun with Echolalia

The boy has never been a good sleeper.  I have to remind myself of this whenever I start waxing sentimental and idealizing his babyhood.  Yes, he was a lovely baby.  We could take him anywhere and he would go to anyone.  He would coo and laugh and go with the flow.  But he did not sleep.

At first, I didn't really notice.  Sure, I couldn't put him in his crib while he was still awake like I did with his brother, but I didn't mind.  He was my baby and we weren't having any more.  I'd rock him to sleep and love every second of it.

Ah, but then I went back to work.  And the kid still wouldn't sleep.  Or rather, he'd fall asleep and wake up in the middle of the night, much like he does now.  In the early days, we'd park him in his pack-and-play in front of the t.v. and play a Baby Einstein video on repeat all night.  Then one of us would flop out on the couch and doze to the sounds of the music box orchestra.

(Side note:  Have you ever learned something from a Baby Einstein video and played it off like it's just something you know?  Oh, that tune?  That’s Mozart.  Oh, and that’s a painting by Van Gogh.  Yeah, his yellow period.  What do mean you can’t tell the difference between Bach and Handel?  Bach is a bunny and Handel is a turtle.  Duh.)

Fast-forward a couple of years, and the boy still wasn’t sleeping and he was still into Baby Einstein.  (A friend of mine calls those videos Baby Crack.  They’re also Autism Toddler/Preschooler-and-Beyond Crack.) So, his latest obsession was the Baby Einstein Lullaby Time.  I thought it would be soothing.  I didn't expect him to stim on the sheep puppet. 

A feast of stuffed animals!

It was a really awful time for us because he was up all hours and he was a lot more mobile.  It was around this time that he first buttered the couch.  (I say "first" because we had several couch-buttering incidents before we finally put an industrial lock on the fridge.)  He also wasn't very good at telling us what he wanted.  He had a few words and signed a little, but he often used his own language to describe what he wanted.  For example, the Baby Shakespeare video was called the "Blah Movie."  Why?  Because the dragon puppet says "Blah!", but not in that movie.  He says "Blah!" in Baby Mozart.  I suspect you know this already.

So, we'd had several sleepless nights in a row when the boy woke up at three (again!) and started pitching a fit.  I brought him into the living room so he didn't wake the rest of the house, and prepared myself for some weeping and movie charades.  Instead, I got this:

"I want the fucking sheep movie, please."

Clear as a bell, but I couldn't even respond.

"Wuh, what?"

"I want the fucking sheep movie, pleeeeeease, Mommy!" he wailed, adding signs for emphasis.

"You want the flock of sheep movie?" I thought a little redirection was in order.

"NO!  I WANT THE FUCKING SHEEP MOVIE!  I WANT THE FUCKING SHEEP MOVIE, PLEASE!!"

"OK!  The sheep movie it is!" And I started the movie.

He curled up on the couch, snuggled with his Pooh Bear, and muttered, "Yes, sheep movie, sheep movie, fucking sheep movie."  I returned to the bedroom and pulled the covers off my husband.

"Dude," I began in the sternest voice I could muster.  "Is there any reason why our son just asked to watch the fucking sheep movie?!"

It took him a second to respond.  He rubbed his eyes and yawned.

"Perhaps, in a moment of weakness at three a.m., I may have said something like, Fine, I'll put on the fucking sheep movie,"  he admitted.

"Well, great, because now our three year-old is asking for the fucking sheep movie," I sighed.

"OK, but did he ask in a complete sentence?"

"Yeah."

"Well, there you go," he grinned, rolled over, and was instantly asleep.

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?