Sunday, December 28, 2014

Kids Make Us Say the Darndest Effin' Things

When Big Bro was little, I used to tell my friends all the adorable, funny things he said.  They'd crack up and urge me to write them down.  "These are priceless," they'd say.  "You don't want to forget them."  He's so precious--how could I forget? I wondered.  Well, I forgot.  I know, I suck.

What has stuck with me through the years is all the crazy stuff I've said.  I don't know where it comes from, but somewhere along the line, I lost the plot.  I groan like Marge Simpson.  Often.  When Big Bro told me I'm like a cartoon mom, I yelled, "Marge Simpson is real!  And she is me!  Or she is I.  I is her.  Oh, fuck it."

My children led me to this.  And I know, as an autism mom blogger, I tend the emphasize the impact of autism on our family and on my brain.  But guess what?  Both boys have turned me into a ranting lunatic.  My NT child is just as guilty as my ASD child.

So let's play a game.  I will list some crazy-ass things I've said, and you guess who made me do it!  What it the ASD Boy, or NT Big Bro?

1. Get the whipped cream out of your pants.
2.  Minnie Mouse doesn't want to see your penis.
3.  What's the rule about light sabers in the car?
4.  PEE IN THE POTTY, NOT THE FRIDGE!
5.  Don't rub your butt on the store window.
6.  Don't rub your butt on Harry Styles.
7.  No pants, no ice cream.  These are the rules.
8.  Get your foot out of your brother's potty!
9.  Do not wipe your nose on my butt!
10.  Just because you rub something on your penis, it doesn't make it yours!
11.  Did you really just poop in your hamper?
12.  Play the piano with your fingers, not your butt.
13.  If you pee on the potty, I'll give you candy.

Are you sensing a theme?  Yes, boys are gross.  That's my theme.

Answer key:  1) Big Bro 2) The Boy 3) Big Bro 4) The Boy 5) Big Bro 6) The Boy 7) The Boy 8) Big Bro 9) The Boy 10) Big Bro--he was trying to lay claim to a chocolate bar 11) Big Bro--he just wanted to see if he could 12) The Boy 13) Both of them.

As I'm finishing this, the Boy enters the room, butt-naked except for a large blanket arranged around his shoulders in a regal fashion.  He is pushing a stroller with Mickey and Minnie in it.  

"Mommy, sit on the couch please."
"But you're not wearing pants.  I couldn't possibly sit on the couch unless you put on pants."

Add it to the list.
 

Tuesday, November 4, 2014

This Angry Mom Calms the Eff Down...Sort Of

When my son colors, he colors aggressively.  He presses down hard and leaves a layer of wax on the paper so thick that he practically creates his own scratch pads.  It's a sensory thing, I think.  I don't mind because it seems to help him blow off steam and it's encouraging him to use his "bird beak" grip on the crayon.  Years of OT have gotten him to this point.

The boy has crap fine motor skills.  I know this.  When we work on papers that ask him to match a picture from one side of the page to the other, he can point to the correct answer, but drawing a line from picture to picture is difficult for him.  Not only does he have to grip the pencil correctly, but he also has to cross the effin' midline.

Last night, I received a large envelope with an order form.  It said, "Look inside to see the special card design your child has created!"  Considering that his homework the other night looked like this,---------------------------------->
I was expecting some kind of Pollock-esque, action-crayoning mess.  In fact, I was looking forward to it.  I pictured his intense little face--jaw jutted out--as he savagely scribbled.

Imagine my surprise when I saw this:

Aide-made!


What the actual fuck?  I can't even begin to talk about how wrong this is.  What am I supposed to do with this?

Here's the thing, folks.  Despite the fact that I curse often, I'm not an angry person.  I don't offend easily.  It takes a lot to piss me off.  I'm a public school teacher and I know the hoops we're expected to jump through, the daily insults to our credibility and profession, and the unreasonable expectations of parents and administrators.  I'm especially sensitive to all of this, but I can't fathom any reason why a teacher might think I'd want to order greeting cards designed by a paraprofessional.

I seethed.  I raved.  I ranted in private Facebook groups about the insult of it all.  This was the artistic equivalent of a pity fuck!  And then I poured myself a glass of wine and watched a few episodes of Key & Peele until my blood pressure went down.

I prepared to write the dreaded indignant parent email.  What I actually wanted to write would've looked something like this:

     Dear Art Teacher,

     Thanks a lot for the order form.  I was truly impressed with his self-portrait.  You must be an amazing teacher to improve his drawing skills so dramatically in two short months!  You have got to be kidding me.  Do you really think I would believe this was my son's work?  Or that I'm going to order cards designed by his aide for your little fundraiser?  Yeah, I'll send them out to all our friends and family.  "Look what the boy's aide drew!  Can you believe she's only 43 years old?!  We are soooo super proud of her!"

     Maybe he didn't feel like cooperating during art class that day.  Maybe he just scribbled.  You know what?  I'm happy with a scribble!  I don't give a flying rat's ass whether or not my child can draw a self-portrait.  We have bigger fish to fry--like learning to grip a damned pencil.  Send me his real work and don't waste my time with this bullshit.  Did you feel sorry for me that my son's drawing skills aren't up to your standards?  Well, your heart may have been in the right place, but your head is up your ass.  My son needs support and understanding, not your pity.

                                                                                                             Sincerely,
                                                                                                       Mrs. Effin' A. Mom

I did not send this email.  I thought about my mother-in-law's saying, "Kill them with kindness."  Reasonable friends suggested I give the teacher a chance to explain first.  And then there's the old adage, "Honey and vinegar and shit."

So I took some deep, calming breaths and wrote a brief email asking her why I received a design that was clearly not the boy's work.  She responded with an apology and explained that this was a graphic design fundraiser and it "didn't register" with her that this was something completed by the aide and that she hopes I've seen other projects that have "included his input."  I took a deep breath, gritted my teeth and composed this response:

     Dear Art Teacher,

     Thank you for clarifying.  I would be happy to order a card containing the boy's designs.  I know he's not yet at the level of creating self-portraits.  He still struggles to hold a pencil or crayon appropriately, and I'm proud of the progress that he has made in that area.

      I would hope that anything sent home is my son's work and contains more than just his "input."  In the future, if he refuses to do the task, please write me a note.  If he simply scribbles all over the paper, please send that home.  I would rather see my boy's scribbles than work completed by an aide.

Thank you.


                                                                                                              Sincerely,
                                                                                                      Mrs. Effin' A. Mom

Sometimes I think I ought to fly off the handle more often.  Maybe these bizarre stomach pains I've been having would be relieved if I just lost my shit on people.  Then again, I'd end up feeling guilty and developing an ulcer...if I don't have one already.
  
But maybe I don't need to freak the eff out.  People generally mean well, and I understand that meaning well is not the same thing as doing well.  It comes down to this:  I know my kid and I know what he can do.  If the school ever sends me his aide's work again, I will send it back with a sticker and a comment, "Good job, Mrs. Smith!"

 I'm reminded of the old saying that Irish Diplomacy is the ability to tell a man to go to hell so that he looks forward to making the trip.  

Or as my husband explained, "You're good at telling people to fuck off, but you do it classy-like."

Thanks, hon.

Wednesday, October 8, 2014

The Cupcake Crisis and Other Non-Problems

It's October.  Time to go apple-picking!  (Nope.)  Put up the scarecrow!  (Can't find it.)  Carve a pumpkin!  (Probably not.)

I let a lot slide this month because I'm gearing myself for the one-two punch of Halloween and the boy's birthday.  I make a big deal.  I have to.  There are only five kids in his class, and if we don't host a party, he might not get to go to one all year.  It's a moral imperative.

I'm usually all jazzed about this, but this year, I'm a little worried.  We're in a theme rut, folks.  For the past two years, the boy has worn a homemade Perry costume for Halloween and has had Phineas and Ferb birthday parties.  It's the only thing he likes.


I made the Perry costume out of a t-shirt, hat, and long underwear.  For the second Halloween, I just bought bigger long underwear.

The first Phineas and Ferb birthday party featured cupcakes decorated with little plastic character rings.  For the second party, I made these Perry cupcakes.  I think I knocked it out of the park, if I do say so myself.  And now I don't know what else to do.  I'm not a Pinterest person.  I had an account but I think it got hacked because there are a million pins about how to firm up your booty.  I don't care about my booty; it's behind me and I can't see it.  I don't even have one.  I'm serious.  If you look at me sideways, I go straight down.  I have legs and a back.

But I digress.

Do I just make the same cupcakes again?  It's not like I'm trying to impress anyone but my kid.  The other autism moms are fantastic and they understand better than anyone that a kid can get stuck on a theme.  Dare I attempt a different character?  He likes Nemo, but only wants to watch the scene with the seagulls.  He likes Woody and Jessie, but has never even seen Toy Story, nor does he care to.  He just wants to pop the heads off the figures.

What's a mom to do?

I know these are not real problems.  I know this.  Believe me.  We have enough real problems that I know the difference.

But the real problems are so much harder, if not impossible.  They are too real.  We have doctor's appointments and MRIs and medication and behavior plans that rarely work.  We have family members who refuse to have a relationship with our boy and therefore no longer have a relationship with us.  We have financial worries--both short-term and long-term.  What's going to happen to him when we die?  Why isn't there any music therapy within an hour of our house? And why the eff can't I find a gluten-free bakery that does children's cakes?

There is so much I can't control, but I refuse to sit on my nonexistent ass and do nothing.  So I will obsess on the cupcakes and throw my boy a great birthday party.

And yeah, probably buy even bigger long underwear for the Perry costume.




Tuesday, August 5, 2014

Five Reasons Why I Still Tri

When I decided to do my first triathlon, the Boy was only about five months old.  I announced my intentions to my family.  My mom, attempting to stifle a laugh, took a gulp of wine and then said, "Um...ok?"  She had reason to be skeptical.  I didn't own a bike, the most I had ever run in my life was one mile in gym class once, and swimming was something I thought you did if you fell out of a boat.  When my friend convinced me to take a spin class with her, I complained for two days that my cooch was sore.

I wasn't what you'd call athletic.

I just wanted a challenge--something to do that I'd never done before.  I had been a dancer, but I found the adult dance classes depressing.  As a teenager, I could sink into splits, but now I could barely get my foot up on the barre.  So I bought a book called Slow, Fat Triathlete by Jayne Williams and got to work.  And four months later, on August 8, 2008, I crossed the finish line for the first time in my life.  My husband was there waiting for me.

"You are amazing!" he yelled. 
Celebrating our awesomeness.
"I KNOW!" I shrieked.

It was the most wonderful feeling to know that I had done something I never thought I was capable of doing.  I proved to myself that I am a badass when I need to be.  That feeling would become very important to me before too long, because almost exactly one year later, we got my son's autism diagnosis.  And I thought, OK, you can do this.  You're tougher than you thought.  Triathlons gave me the confidence to face the never-ending challenges of parenting a child on the spectrum.

 I still race.  I'm not much faster than I was when I started and I don't train as much as I'd like.  (That whole autism-parenting thing takes up a lot of time.)   I'm not competitive.  I run my own race--which is usually far behind a lot of other people, but that's o.k., because I'm still in it. I have nothing to prove to myself now.  So why do it?  What started out as a challenge has become a lifeline.  Racing is my therapy.

Because everyone loves lists, here are my top five reasons for racing:

1)  Training.  Without the goal, I would not train, and training is important and sometimes fun. I love the feeling of being in the water--my earplugs and goggles help me block out the rest of the world.  I just count my strokes and listen to the sound of my own breathing and follow that blue line at the bottom of the pool.  Sometimes training brings unexpected fun, like the time my husband and I went out for an exhausting, hilly ride and ended up at a bar with a sign that said "Bikers Welcome."  We were not the kind of bikers they meant.  They wore leather.  We wore spandex.

2)  Health.  This isn't about weight loss.  (I don't consider myself "spandex-ready," and I don't care.)  It's about time to focus on myself, and do something just for me.  But it's also about my family--about being there for my family.  I have to live a long, long time.  My kids are going to need me and I want to get as far as I can before I have to pass the baton.  Besides, our lives are stressful; this is a positive way to deal with stress, and allows for some trade-offs.  Like my buddy Joe said to me in the faculty cafeteria, "As long as I'm teaching special ed, I can't quit drinking.  So I'm gonna eat this salad."  I'm not quitting wine or M&Ms anytime soon.

3)  Triathlon people.  Love them!  Tri people are the most encouraging and open people in the world.  Shivering at the water's edge before a start immediately bonds people.   Athletes emerge from porta-johns with their arms raised in triumph.  "Yes!  I POOPED!"  And we cheer.  (Note:  It's very important to poop before a race.  Triathletes discuss poop as often as autism parents do.  They are my people.). 

4)  Triathlon spectators.  They cheer for everyone--not just their friends!  They bang on cowbells and hold up signs. I love these people.  How great would life be if we had these spectators cheering us on as we faced other challenging moments in life?  Imagine trying to drag a mid-meltdown child out of Target, and you've got a crowd of supporters encouraging you.  "You've got this, Mom!  You are awesome!  Only two more aisles and you're out of the store!  YOU CAN DO IT!"

5)  The Finish Line.  I need a finish line.  I need to look back and say, Yeah, I did that.  I need to feel like I've accomplished something.  Parenting is great, but it's never done, it's never over.  But when I cross the finish line, that can't be undone.  I've done this great thing and I've done it for myself and there's nothing that can take that away. 

Plus, many of the better races have a beer garden at the finish, and that's good, too.




Friday, August 1, 2014

Stimmy Science: Our Trip to the Liberty Science Center!

Last week, I took advantage of my first-ever blogging perk, and took the boy to the Liberty Science Center in Jersey City, New Jersey.  I hadn't been there in years, and it's an impressive place.  Big thanks to Jersey Moms Blog for setting this up!

Effin' Daddy couldn't make it, so my brother and sister-in-law met me with my niece, the Divine Miss M.  The Divine Miss M had been here before and assured me that it was "really fun especially the blocks because you can use your imagination and I like to use my imagination and build stuff and when are we going to play with the blocks?"

First of all, this place is big.  Crazy big.  Get a good night's sleep and wear sneakers, because there's a lot to see.  When we walked in, the boy was immediately taken with the funky lights on the ceiling.  Everywhere we looked, there was something stimmy to check out.  My niece loved the Hoberman Sphere, which expands and contracts over everyone's heads.  It's very cool.

This is a very family-friendly place, complete with family bathrooms and wide staircases.  The café sells ice cream, which is an absolute necessity with our family.  It's very colorful and the staff is knowledgeable and helpful.  If you've got a sensory-seeking kid who likes to touch all of the things, this is your place.  There's even a special section for kids age five and under where they can play and explore without fear of being trampled.

The boy liked the Adventures with Clifford exhibit.  It's very cute--it's like the kids have been dropped into one of the books.  My niece LOVED the Block Party, where she could build with big interconnecting foam blocks.  They both loved the Wildlife Challenge, which is a really cool outdoor obstacle course with a dinosaur.

I'm going to be honest.  The way the boy has been lately, this place was too much for him.  He's generally been a sensory-seeking kid, but with the summer schedule thrown off, he's been a bit fragile.  The high ceilings and the other kids shrieking for Clifford the Big Red Dog put him over the
edge, and we didn't see as much as we'd have liked.  The boy was in sensory overload.  He kept crying for his daddy, so maybe we'll come back with my husband, maybe on one of their special-needs days

I want to go back to the animal exhibits.  They have something called "Eat or Be Eaten," which just sounds like my cup of tea.  I want to go back and see an IMAX movie.  And you know what's cool?  They have a theater there with 3D films that are shorter than the IMAX movies, so the kids might stay put.  Warning:  My brother took the Divine Miss M to the thunder and lightning show, which he thought was cool, but made her cry.  She's six.

My brother wants to go back without any kids, but maybe that's just him. 

How amazing is this view?

 

Disclaimer:  As a Liberty Science Center Blog Ambassador for the day, I have been provided with vouchers for my visit.  All opinions are my own.


Thursday, June 26, 2014

My Boy is Caesar, Sun Tzu, and Genghis Effin' Khan

We've been dealing with some "behaviors" of late.  (That's polite autism-speak for "my kid has been an uncooperative asshole.")  I told the school that I wanted a behavior plan.  I was told that he didn't need one, presumably because he hadn't started any fires.  The behaviorist was happy with the compliance trials.  The behaviorist didn't have to live or work with my son on a daily basis.

For those of you who are unfamiliar, a compliance trial rewards tokens to kids for doing what they're told.  When they get enough tokens, they get a special reward.  The idea is to get them back on track, but my boy works around it.  It goes like this:

Boy:  I want a cookie!
Aide:  You need to finish writing your letters first.
(Boy throws himself on floor in boneless, jellyfish fashion and refuses to do anything.)
Aide:  Touch your nose!  (Boy touches his nose.) Good touching your nose!  (Puts token on board.)  Touch your mouth!  (Boy touches his mouth.)  Good touching your mouth!  (Puts another token on board.)  Okay, sit up and you can have your cookie.
Boy:  Thank you.  (Eats cookie, then throws himself on floor in boneless, jellyfish fashion all over again.)

When I brought this up at the IEP meeting, that he's figured out how to manipulate the trials, the behaviorist said, "Well, I don't know if intellectually he understands what he is doing."

If I had been drinking my water, I would've done a spit-take right across the table.

My boy knows exactly what he's doing.  He is a military genius.  He is a criminal mastermind.  He is an effin' Sith Lord.

When there is something he wants that is closely guarded--cookies, for instance--he creates a diversion.  I'll be in the kitchen working on dinner, and he'll ask for a snack.  I'll say, "No, it's almost dinner time."  Then he will rage.  Or he won't.  It's when he doesn't rage that I should get my guard up, because he's about to eff with me big time.  He quietly backs out of the kitchen, and I, relieved that there was no hysterical scene, foolishly go back to food preparation.

That's when I hear the shower.

He's turned it on full blast and aimed it out of the tub, onto the bathroom floor.  I go running in.

"What are you doing?!  STOP IT!  YOU'LL FLOOD THE HOUSE!"  And then, while I'm mopping and cursing, he slips into the kitchen and takes whatever he wants.

He's a master tactician.  Some of his plans I haven't even figured out yet.

"How did you do that?  How did you DO that?!"  Then I just step back and take a deep breath and whistle through my teeth.  You've got to admit, he's got a mind for strategy.  

In the middle of the night, he's pretended to fall back to sleep so I would get back in bed and not thwart his plans to paint the kitchen floor with dish soap.  Or he'll say, "Go to sleep, please, Mommy," and I'll know he's up to something, but I don't know what.

And now he's learned to pick locks.

I'm not even kidding.  We hid the keys to the kitchen locks, so he used my car keys to open them.  He helped himself to a huge serving of chocolate ice cream on the couch.  So my husband locked ALL the keys in the closet and then hung the closet key around his neck.

So the boy punched out the accordion sides of the air conditioner, and while we were fussing with duct tape to fix it, he picked the freezer lock with a pair of scissors and helped himself to more ice cream.

"How did you DO that?!"  Then I tried to unlock the freezer with a pair of scissors, but I couldn't figure it out.

He's doing all of this without any help.  Alexander the Great, Napoleon, and Stonewall Jackson all commanded huge armies.  They had underlings.  My kid is pulling this off all by himself.  I thank God I didn't have twins.

So, Behaviorist Lady.  Never underestimate my kid.  He's not one of Skinner's rats pushing on a lever to get a pellet.  He goes for the full-on mind-fuck, and he's going to tear your little plan apart.

If I didn't need it to work so badly, I'd almost find it entertaining.




Monday, June 9, 2014

Autism and the Art of Defenestration

Defenestrate (dēˈfenəˌstrāt/) v. To throw out a window
I love this word.  I believe I use it more often than the general population does.  I teach middle school, and in my work setting, it's a remarkably handy word.
"Put the cell phone away, or I will be forced to defenestrate it." 
"Huh?"
And then I explain.  Defenestrate provides its own teachable moment.  The word comes from fenêtre, which is the French word for window.  The Latin prefix "de" means "out of."  This beautiful little word allows me to teach vocabulary--covering affixes and the origin of the English language, beginning with the ancients and up through the Norman Invasion--all while threatening my students in a memorable way.
Can you use it in a sentence?
The boy defenestrated his shoes

Here's where I'm going with this:  Have you ever seen a shoe on the side of the road and wondered how it got there?  Well, wonder no more.  It was my kid.  Mystery solved.

This is a new thing.  It started a couple of weeks ago, as he rode home in Grandma's car.  He took off his shoes and socks and threw them out the window.  She didn't notice.  Fortunately, my husband was following them in his car, and pulled over to get the shoes.  We had a good laugh about it and remarked how lucky we were that my husband saw what happened and was able to rescue the shoes!

Alas, our luck changed.  The other day, we met at Dairy Queen after work.  The boy was in raptures over his little cup of ice cream.  I had more errands to run, so my husband took him home.  When I got home, I found my frantic husband tearing the car apart while the boy stood barefoot in the driveway.
Lonely shoe seeks mate.

He'd done it again. 

"Can you go look?" my husband asked.  No problem!  I didn't mind.  I had an audiobook in the car, anyway.

I started back down the road, retracing the route my husband had taken.  I drove slowly and scanned the road for the shoes.  My eyes were zipping back and forth so quickly, I felt like one of those Cylons from Battlestar Galactica.  (The old ones, not the updated ones.)

It is 6.7 miles from my house to the Dairy Queen--6.7 miles of winding mountain roads with no shoulder, let alone a sidewalk.  But I did not give up hope.  Three miles in, and I saw one sneaker in the middle of the road!  Success!  I had to drive down the road a bit to find a spot to pull over.  I ran back up the road, waited for a car to pass, and then snatched up the sneaker.  I figured the other one was probably close by, so I paced up and down the road and checked the bushes and the ditches for the shoe.  It occurred to me that I should have changed into running shoes myself, instead of hiking along in my work heels.  Several motorists stopped to see if I was all right.  See, unless you're in workout gear, you do not just walk this road.

On my way back to the car, I spotted his sock.  Yes!  How did I know it was his sock?  Mother's intuition.  Plus, it was still warm.  I swear I was like an outback animal tracker.

I continued down the road, where I saw another sock...and yes, it was his.  Excellent.  I was making progress, and I'd only been gone for an hour.  Two socks, one shoe.  Back in the car, continued down the road.  What are those lights?  Uh, oh.  Police.  Apparently, there was a fender bender at the intersection where we'd turned right after we'd left Dairy Queen.  I hoped to God it wasn't caused by a flying shoe...

I banged a U-ey (that's Jersey-speak for a slightly illegal U-turn) and headed back from whence I had come, still searching the road, when my Cylon-sensors picked up on something familiar.  I pulled over.  It wasn't black like the shoe, but yellow--my husband's golf hat.  He didn't even realize it was missing.  

Two socks, one shoe, one hat.

Text from my husband:  "Give up and come home.  He's melting down."

Sigh.

I crept home, hoping to find that other shoe, but...nothing.  I was so disappointed.  I felt defeated by this sneaker.  That was a week ago, and I'm still looking.  This shit has gotten personal.  I'm obsessed with finding this effin' shoe.  It will be my downfall.  I'm Captain Ahab and this damned sneaker is my Moby Dick.  Even my 11 year-old has tried to get me to give up.

"Mom, it's been a week.  It's rained four times and the mowers went by.  Let it go.  The shoe is gone."

I guess you've got to be pretty effed up when a sixth grader becomes your voice of reason.  Maybe one last search.

Thus, I give up my spear!









Wednesday, May 21, 2014

Haircuts Can Suck It: Our Flowbee Experience

As a newbie, I didn't understand what a big effin' deal it was to give a spectrumy kid a haircut.  My 20 month-old had curly little ringlets that didn't get in the way of anything, and I was too busy researching how to "fix" my kid when I came across a "miraculous" video of a little autistic boy sitting patiently as his hair was combed and trimmed.

I was unimpressed.

Did I mention I was a newbie?  I was all, A haircut?  Are you kidding?  I want my boy to go to college.  I have higher aspirations than haircuts!

I was an ass, but I learned soon enough.

In the years since, we caused so many barbershop spectacles.  We were the Traveling Circus of Snot.  We tried bringing toys and treats.  We tried seatbelts on the chair.  We tried letting him stand during his haircut.  We even experimented with different times of day to see if that made a difference.  The barber, a wonderful woman whose best friend's kids are on the spectrum, tried everything in her bag of tricks.  He raged and jumped around and she ended up cutting her own finger.  We left a big tip and with half his head trimmed.  And I don't even want to talk about the time I took him to one of those kiddie salons, with all the well-behaved toddlers and their staring moms.

So Grandma took over.  I may have mentioned that my mother-in-law is some kind of white witch who can get him to do amazing things, like sleep.  For a little while, she was able to trim his hair enough that it was out of his eyes.  So that worked...until it didn't.  The hair situation was getting out of control.  His hair no longer curls, so when it’s long, it’s loooong.  It was in his eyes and sticking out in all directions…and he would barely let us brush it.  
 
On my Facebook page, I jokingly suggested that I should just buy a Flowbee.  Remember the Flowbee?  Back in the ‘90s, there were these hilarious commercials of this haircutting device that attached to a vacuum hose.  The hair would be sucked up into the vacuum and then trimmed and sucked away!  We used to laugh and laugh at the commercial.  Who would actually buy this?  Autism moms, that’s who.  I didn’t know they still made them, but some readers sent me Amazon links, and swore it was the only way they could cut their kid’s hair.  Really?  But, I reasoned, the boy hates haircuts and loves vacuums, so why not?

"Eff it," I said to my husband.  "I'm buying a Flowbee."

When the Flowbee arrived, we were giggly and excited.  Who buys a Flowbee?  WE DO!  It was like the last thread that bound us to normalcy was cut.  We were those people.  We giddily assembled it and connected it to the vacuum.  Damn, that thing is loud. 
Not the weirdest thing I've done as a parent.


It took some time to figure out which was the right attachment, so we did a lot of plain ole vacuuming of the kid's hair.  And then finally, we heard it--Buzz-zap!  It cut his hair!  The boy sat on the floor and watched his hair swirl in the vacuum.  Zap!  We trimmed his bangs.  Now with the short bangs and longish hair, he looked like a medieval page...or Mickey Dolenz of the Monkees.  Cool!

Then he decided he'd had enough and ran away.

"Come back, Mickey Dolenz!" I screamed.  

I managed to wrestle the boy back to the vacuum and tried to engage him in the wonder of swirling hair.  He lost his fascination with the Flowbee, but because there are no dangerous clippers, I was able to tickle him (and tackle him) while my husband vacuumed his head.

And how was the haircut?  Well, it looked like someone trimmed his hair with a vacuum cleaner, which was no worse than any other haircut he's gotten.  So we're cool with that.

Thank you, Flowbee!











Saturday, April 26, 2014

Fakebooking and Lies by Omission

This is my Facebook status:  My son got the game ball!  I'm such a proud mom!  :)

And it's true.  Today was opening day for Little League and my older son's first time in the "Majors."  He pitched--one inning was a 1,2,3--and had a great offensive game as well.  He crushed a line-drive double off a smack-talking pitcher, but rather than talk smack back, he just nodded and smiled.  He stole three bases.  They won.

And I missed all but the last half inning.

My ASD kid, The Boy, had an epic meltdown before the game even started.  Correction:  It wasn't a meltdown.  It was a rage.  He raged like I have never seen him rage.  And he hurt me and almost caused a car accident.

Before the game, the boy asked for ice cream and to go home.  I thought, OK, I'll take him for some ice cream and we'll be back in time for the game.  I got him into the car and drove in the direction of the ice cream shop.  And for some reason unbeknownst to me, the boy utterly lost his shit.

I don't know what triggered it, but he started screaming.  He took off his glasses--new ones we had just picked up this morning to replace the ones he broke last week--and broke them in half and threw them at me.  I pulled over to see what was the matter, and he unbuckled his seatbelt and hit me.

No ice cream, then.  I re-buckled his seatbelt and drove home.

I don't know if I can adequately describe the trip home.  "Nightmarish," "terrifying," "horrific," and any other drama queen words would be an understatement.  He scratched at my face.  He pulled out chunks of my hair.  He kicked me in the head.  He screamed and raged and punched and bit and completely lost control of himself.  I kept having to pull over so I could wrench his fingers from my hair or his teeth from my arm.  Both of us were sobbing.  Who was this child?

We finally made it home and I ran him a bath to calm him down.  I sat on the bathroom counter and emailed his doctor from my phone.  I'm not sure what I wrote, but I'm sure it was an incoherent, blubbering mess.  I sent my husband a text basically telling him that I hated his guts because he got to coach Little League and do typical parent things and I got to get the shit kicked out of me.  (This was totally unfair of me.  My husband is super-involved with both of our boys.  I was feeling sorry for myself.)  I cried a little bit.

Something you should know about me.  We're four years into this "journey" (and you know what?  Fuck that term, "journey."  I hate it.) and I've hardly ever let myself cry.  We got the diagnosis and I cried for about 30 seconds and got to work.  I cried the first time he hit someone.  Oh, and I cry for happy things and every damn commercial featuring a dog.  But for myself?  Not so much.

So I texted my husband and asked how Big Bro was doing.  Turns out, he was doing great.  He was pitching great, and I was missing it.  And that's when I really broke down into big ugly tears with loud, heaving, grieving-whale sobs.  My kid pitched a 1-2-3 inning and I didn't get to see it.

Then I got a second text that he got hit by a pitch. 

"Get out of the tub," I said to the boy.  "We're going back to the field."

We got back in time to see the last three outs, which my son pitched really well.  The smack-talker, hoping to unnerve him,  yelled "FAIL!" just as he released the last pitch.  It did the little shit no good.  The throw was a strike and the game was over.  The final score was 16-4 and the head coach gave Big Bro the game ball.

So you see, my son did get the game ball and I am a proud mom.

I just didn't tell them the rest of it.

Now if I post the proud mommy moments, but don't share the nasty stuff, doesn't it stand to reason that other people do the same?  Fakebooking is like farting or picking a wedgie--everyone thinks they're the only ones who do it.

And by the way--next year, I'm attending coaching clinics.  I will assistant coach and my husband will wrangle.  'Cause eff it.





Tuesday, April 15, 2014

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.

Tuesday, April 8, 2014

The Autism Commune in My Head

There are times in the middle of the night, when I get all woe-is-me because my kid won't sleep, that I'm so grateful for my cyber-friends who are up with me--either because their kids aren't sleeping either, or they live in Australia.  (I love the Aussies! Holla!)

 And then I imagine what it would be like if we all actually lived together...in the beautiful autism commune in my head.  Would you like to take a tour?  (This is not real.  This is in my head.  I promise I'm not trying to sell you a time-share.  Go with it.)

First of all, it's not really a commune.  It's more like a gated community.  I'm claustrophobic and I would have to leave once in a while.  Anyway...

Welcome to Spectrum Estates, a judgement-free zone for families with autism.  Our community, bordered by a fence, has a security staff specially trained in helping folks on the spectrum.  Lifeguards are on duty 24/7.

Our streets are arranged according to sensory-sensitivity.  Sensory-avoidance homes are landscaped during the week while the children are at school.  The houses with sensory-seeking kids are landscaped on weekends so the kids can stim off the lawnmowers.  Ditto for leaf blowers and snow plows.  We don't worry about spraying for mosquitoes because this is my fantasy and mosquitoes don't exist.

The climate is warm; clothing is optional.  Obviously. 


There are several restaurants that cater to every possible food allergy and offer seating choices based on sensory preference.  Need booth seating for four in a noisy room full of music and balloons?  No problem!  Need a quiet corner with plush seats and bland food?  We can do it!  Our "date night" restaurant features a separate respite room that serves platters of tater tots and Yoo-Hoo.  There's something for everyone! 

Here at Spectrum Estates, we have a community center with specially-designed rooms for obsessions of all kinds.  Be sure to visit our displays of model trains and vacuums!  Our community center is a place for therapy and playtime, as well as respite care.  We have a gym, pool, climbing wall, and carousel.  There is a tiki bar--no cash necessary.  Expenses are covered by member dues and puzzle piece magnet fundraisers.  "Support Autism.  Buy this Mama a Mudslide!"

One of the best features of the community center is the Moonlighters room.  Softly lit and lined with comfy couches, it is a safe place for sleepless children be sleepless while parents nap or keep each other company.  A selection of bean bag and swing chairs are arranged in front of a number of dim screens featuring soothing favorites like Good Night, Moon, Baby Einstein, and Tales from the Tracks.  We shuffle around in our pajamas and snuggies and clutch cups of coffee or beer.  It looks like finals week in college...only with kids.

The center offers social activities and support for the siblings as well.  There's a specially-stocked kitchen in the Sibling Station full of all the junk food we can't keep in our homes.  They can eat gluten and food dye to their heart's content!  We have movie nights featuring anything other than Thomas the Train, The Wiggles, Blue's Clues, and Fraggle Rock.  Be sure to stop by for our helpful weekly seminars covering topics such as "So Your Brother Dropped Trou in Front of Your Girlfriend" and "Making Echolalia Work for You!"

And of course, the Spectrum Estates activities director organizes plenty of social and wellness events for the parents--yoga, book clubs, wine-tasting classes, wine-making classes, cooking with wine classes...

Everyone is invited to the birthday parties.  Nobody gets mad if you can't make it.  The playground always has enough swings and the trampolines are surrounded by crash-pads.  If your kid wants to wear a Santa hat in June, nobody asks why.  If your child insists on showing neighbors his plastic bug collection, there's no need to apologize.  If your kid is naked in the front window, nobody will notice.

"Spectrum Estates--Where People Get It."

Happy Hour is at 5:00. 


Friday, March 28, 2014

Greener Grass And Fences And Shit: Why We Are No Worse Off Than Anybody Else

I sometimes speak in a proverbial shorthand I learned from my father.  It started years ago, when my mother, a catalog-shopping enthusiast, told me I needed to be more careful with my money.  My father, blown away by the irony of my mother offering financial advice, attempted to tell her that this was like the pot calling the kettle black.  Only it didn't come out that way.

"Pots and kettles and shit!" he shouted, waving his arms in some kind of gesture meant to indicate a connection between us.  "I mean, are you kidding?!"

A new way of talking was born.

I've taught proverbial shorthand to my colleagues, and it's served us well as educators.  Like when we call a meeting to discuss the attitude problem of a student, and meet the surly parents.  "Wow! Apples and trees and shit, huh?"  Or when we give up our lunch periods to tutor kids who don't show up.  "Oh, well, you know.  Horses to water and shit."  Or even the notion that we have to jettison the entire existing curriculum to accommodate the Common Core.  "Really?  Don't you think that's just baby and the bathwater and shit?" 

Note:  It's imperative to add "and shit" to the abbreviated phrase.

Anyway, this all leads me to my point, which is, "Greener grass and fences and shit."  I mean that we sometimes get it into our heads that our NT friends have happier lives than we do.  But I don't think they do.  Their lives are different, for sure.  Easier?  Most likely.  But happier?

There are times when it's almost impossible not to compare.  After spending an afternoon at a friend's house, Big Bro was uncharacteristically quiet.  I asked him what was up.  Didn't he have a good time?

It turns out he had a really good time. He and his friend played soccer and basketball and manhunt with her younger brother.  Then they went swimming and ate pizza and played video games--all three of them, all day long.

"It's just...she gets to play with her brother.  It must be nice.  My brother doesn't play like that."  And there it was.

I tried to explain how different the circumstances were.  Laura and her brother were a year apart in age.  There's a five year age gap between our boys.  Apples to oranges and shit.  But he wasn't having it. 

"Look," I said.  "Our family is different.  But there is no less love in our house.  Yes, Laura and her brother play together, but they also fight like cats and dogs.  Your brother doesn't play ball with you, but he does idolize you.  To him, you are better than Elvis and the Beatles and Derek Jeter all in one.  We do things differently here.  But we still love each other just as much."

That doesn't mean it's easy. 

One night, when things were getting particularly "interesting" in our house, my husband got frustrated.  "Other families get to watch movies together.  Other parents get to relax a bit.  Why is nothing easy?  Why is everything such an effin' tractor pull?"

And I responded, "I don't know.  But nobody is any happier than we are."  And I meant it.  I mean it.

We were once an NT family--just the three of us.  Were we happier then?  Of course not.  We had our worries and stresses and arguments.  We didn't know at the time that our lives were relatively simple.  We didn't know that a few years down the road, we would be installing locks on every appliance and door.  We didn't know that we'd be in this club we'd never asked to join, but has the most amazing members.  All we knew is that our family didn't feel quite complete. 

Well, it's complete now.  He's our miracle.  And yes, it's hard.  We're on our toes 24/7 and we don't get enough sleep.  But we get to celebrate every little milestone.  We get as excited about the boy playing Candy Land appropriately as we do Big Bro making the honor role.  They both bring us such joy.  We're going to worry about some things that other families don't worry about and they're going to worry about some things that don't cross our minds.  And that's cool.  Everybody has their shit.

And shit does get weird around here.  Sleep is interrupted all the effin' time.  Our conversations revolve around meds, therapies and meltdowns, as well as report cards, scout meetings, and baseball practice.  Every outing requires Navy Seal-level planning.  There is often some kind of food substance stuck to our walls.  And we watch an awful lot of Raffi.  But we laugh an awful lot, too.  My kids are funny.  I mean, the boy was naked and trying to hang rosary beads off his junk!  That's good comedy!  We have dance parties in the kitchen to Harry Belafonte and the Beastie Boys.  And I can hardly wait for the weather to get warm so I have an excuse to blast the kids with the garden hose.  Oh, how we all laugh!

Other families likely have cleaner houses.  Other families definitely have quieter houses.  But I don't believe that other families have happier houses.

Home and heart and shit.




Wednesday, February 5, 2014

Autism Sensory Cookbook: Mushy Edition

To call our kids "picky eaters" is to make a laughable understatement.  So many of us have tried to break our kids out of the fries-pizza-ketchup diet (or fill in what your kid eats here_____________) and we just end up feeling frustrated and eating the food ourselves.  Then we feel frustrated and really, really full.

Our family had a major breakthrough when we discovered that the boy would eat chili.  Miracle of miracles!  Here was a food that we liked, and he liked, and we could all enjoy together.  So I made pots and pots of chili.  Every week, the crockpot was bubbling with chili.

We got really sick of chili.

What I learned, though, that it was the consistency of the chili that was important.  He liked mushy food he could eat with a spoon.  He only ate ground meat.  (And chicken nuggets, but let's not kid ourselves.  They are ground.)  If we told him it was chili, then he ate it.  Soon, we were moving onto meatloaf and eggs and other mush.  Then I got clever and started sneaking veggies into the food.  Now I'm the Mushy Veggie Iron Chef Ninja!  (I need a better name.)
I love this effin' thing.

How do you do it, Mushy Veggie Iron Chef Ninja? you may ask.  Well, let me tell you.

First, get yourself one of those Pampered Chef chopper thingies.  (This is not a paid endorsement.) 
They chop stuff up into teeny pieces and are satisfyingly loud and thumpy to use.  Great for getting out aggression.

Then, start by introducing veggies your kid already likes, or will never notice.  I put zucchini in everything because it has no detectable taste.  Peel it first if you think they'll get suspicious about anything green.  Chop it up really small, sauté to soften, and hide it in whatever you're cooking.  If your food is brown, mushrooms are good.  I've even fooled Big Bro by telling him the mushrooms were sausage pieces.  Now I chop-n-hide zucchini, mushrooms, onions, and peppers. 


Now, I start with some veggies that look like this:
Onions and peppers and zucchini!  Oh, my!






And then I add it to whatever I'm cooking to make...
Meatloaf Cupcakes!
Hose 'em with ketchup and they'll never see the veggies.







I use gluten-free breadcrumbs for these.  I bake the meatloaf in these disposable tins and freeze them.  Then I just pop out single servings and nuke 'em up.  (I cannot take credit for this idea.  I have a good friend who's on Pinterest a lot.  A lot.)

When we realized he likes eggs, I started scrambling up this mess:

He inhaled this.  I swear.  It's all about mush with him.



I call these "Hamburger Eggs," though there's no meat in them.  I find if I add the name of a food he already likes to whatever I'm cooking, he's more likely to try it.
With the boy, it's about texture.  Maybe that's the key with most kids.  We just have to figure out how to make their favorite textures somewhat healthy.  So I'll leave you with two vaguely written recipes--"Hot Dish" and "Egg Mess."

Note:  I don't know from measurements or time.  Put in enough and cook it 'til it's done.

HOT DISH*  (My husband named this for the unidentifiable slop you'd get in the cafeteria at school--except it's good.)

*AKA "Chili Pasta"--see?  Tricked him!

1 lb ground turkey or beef
2 cups cooked elbow macaroni  (We use gluten-free)
Whatever veggies you can take
Tomato sauce, diced tomatoes, or pasta sauce.

Chop and sauté onions, peppers, or whatever veg you want.  In a separate pan, break up the ground meat into tiny bits and cook.  Drain the fat.  (Or keep it--I won't judge you.)  Add the veg, pasta sauce, and any spices.  We like red pepper flakes.  Throw in the macaroni.  Allow to simmer for a bit and serve.  (Sometimes we sprinkle a little cheese on it if we're feeling crazy.)

I don't have a picture of this, but it looks like hamburger helper--without all the sodium and guilt.

EGG MESS  (This is my version of a frittata, but if I said the word "frittata" to my kids, they'd run.  Call it "Egg Mess" and they ask for seconds.)

1 dozen eggs
1/2 c. milk (I'm totally winging it on this measurement.  I don't really know how much.  Just add milk.  Or don't.  I doubt it matters.)
Tater tots
Bacon, if you want.
1-2 cups of shredded cheese
Whatever veggies you want.

Preheat the oven to 350 or 400.  Lightly spray a rectangular pyrex with Pam.  Line the bottom of the pyrex with tater tots.  Do the choppy/dicey thing with the veg.  Fry up the bacon.  Set it aside to cool and then crumble.  Drain some of the fat, but not all.  Cook the veg in the leftover bacon grease.  Sprinkle the bacon and veg over the tots.  In a big bowl, beat the eggs with some milk and salt and pepper.  Pour egg mixture over the tots/bacon/veg.  Sprinkle cheese on top and bake for an hour or so.  (Check and make sure the top doesn't get too brown.  Cover it with foil if you're nervous.)

I like it with Crystal Hot Sauce.  The boys like it with ketchup, of course.

I don't have a picture of this, either, but it looks like a big-ass frittata.  And it's really good cold the next day.


Wow, this is the most domestic I've ever sounded like!  I don't cook every day.  I like to cook once or twice a week and then live off it.  In fact, I didn't cook a damn thing today because I was too busy writing, but nobody noticed or cared.  It was a Chef Boy-ardee and Glutino pizza night!

Bon appetit, yo!

Saturday, February 1, 2014

Dys-funk-tional Play

I'm in a funk.  I'm trying not to wallow, but I just might have to marinate here for a bit.

It's the weekend.  It's time to do stuff with our kids.  All the good moms on Facebook are posting pictures of the cookies they're baking, projects they're crafting, or at the very least, the messes their kids are making as they play.  And hence, my funk.

My kid doesn't play.

Our house looks like a kindergarten.  Or an OT room.  We have colorful bins of differently themed toys.  We have blocks and books and flash cards and Handy Manny tools.  We have dolls and clothes and bottles and diapers.  We have doctor's kits and games and every damn developmental piece of wood that Melissa and Doug ever created.  We even have a bin devoted to different types of plastic airplanes.

The boy wants none of it.

All he wants to do is carry his Phineas and Ferb figures around the house and script about not breaking toys--right before he pulls them apart.  Then he brings me the pieces to pop into place.  Sometimes they won't pop into place and I have to hide them in a coffee cup until I can glue them back together.  And sometimes having to wait for the glue to dry is more than he can bear and he has a meltdown.  I've learned to keep back-ups.
I'm about to glue my fingers together.

This isn't playing.

His therapist is working on functional play.  We have a wooden train set, and it's like a chore for him to set that up.  He'll paint for about two minutes.  Play-doh goes almost directly in his mouth and gets put away.  Last year, he showed a fleeting interest in the dollhouse at school, so I got him one from eBay.  He doesn't touch it.

This morning I tried to incorporate his obsession into real play.  I took out the Legos and suggested we build a house for Perry.  He said yes, but as soon as we started, he yelled, "No more!" and started throwing the bricks back in the bin.  Then he asked for a movie.

I can't let eating, breaking toys, and watching videos be the only thing he does at home.  But I also don't want to fight with him all the time.  It's Saturday.  I spend all week teaching other people's kids and now I want to play with my own.

(Sigh.)  Maybe Big Bro will let me shoot zombies with him on his Playstation.

Monday, January 20, 2014

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.

Tuesday, January 14, 2014

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.