Can't Even Make An Effin' Phone Call...

We're off on an adventure tomorrow.  We want a beach weekend, but hotels are expensive, so we've found ourselves a nifty little $20 hotel room.  It's called a tent. 

This is going to take some doing, so in order to bring all the necessities, we have to borrow my in-laws' truck.  My mother-in-law called to work out the details.  This is what she got:

"Hello?  Oh, hi, Ma.  GET DOWN FROM THERE!  YOU'RE GOING TO GET HURT!  Yeah, so we're trying to get all the stuff together.  Not sure what we'll need for just one night, but WHERE ARE YOUR PANTS?  YOU NEED PANTS!  I mean, we were thinking about cooking, but it might just be easier to go to a restaurant and then do s'mores for the kids later....Yeah, I'm hoping for good weather.  It was supposed to rain yesterday, but it never did.  DUDE!  IF YOU WANT CHOCOLATE MILK, YOU WILL PUT YOUR PANTS ON!  How is everything with you?...There was something I was going to ask you, but I can't think of what it--GOOD JOB!  YOU PUT YOUR PANTS ON BY YOURSELF!  HERE'S YOUR CHOCOLATE MILK!  What was I talking about?  I keep losing my train of thought....The truck?  Right!  The truck.  Yeah, so if we could trade cars later this afternoon, that would be good so we can start getting packed--WHAT ARE YOU DOING?  DON'T DUMP YOUR CHOCOLATE MILK!  ARE YOU KIDDING ME?  What time would be good for you?..Uh, huh.  There was something else.  Something really important I was supposed to ask you about--WHERE ARE YOUR PANTS?  GET DOWN OFF THE COUNTER!  YOU'RE STUCK?  OF COURSE YOU ARE.  BARE BUTT CHEEKS DON'T JUST SLIDE OFF THE COUNTER.  It was really important, whatever it was.  I should write stuff down, so I don't forget to GET OFF THE DOG!  Yeah, sorry.  I'll call you back when I remember.  Thank, Ma.  Talk to you late--DID YOU POOP?"  <click>

And then I remembered what I was going to ask.

Stimmer and a Movie: Our First "Sensory-Friendly" Film

The boy had been to exactly one movie before this weekend.  It was two years ago, and I took him to see Winnie the Pooh.  I planned that outing like cat burglars plan heists.  I made lists and checked and double-checked them.  I made charts and diagrams.  I had a game plan.  It was like The Italian Job, or perhaps more like The Great Muppet Caper.

"Peanut butter?" 
"Animal ate it!"
"Soo-ry!"

Winne the Pooh is only an hour long, and we went on a sunny Wednesday afternoon about two weeks after it was released.  The only other people in the theater were families with small children, a group of special-needs adults, and one adorable couple in their early twenties.  And us.

We sat in the section in front of the balcony that has seating and spaces for wheelchairs.  Once I was assured that nobody else needed those seats, we settled in and I unpacked a huge array of snacks from my big mama purse.  The seats in that section were good because he couldn't kick the back of anyone's chair.  It did however, make it easy for him to run.  I prepared for this by having him wear his monkey backpack with the little leash.  (You know the one I'm talking about?  The one that people see and either say, "How cute!" or sneer, "You put your child on a leash?"  The people in the latter group can suck it.)

He was pretty good during the movie.  He loved Pooh and I was plying him with snacks.  He got up a few times and I lured him back with the monkey leash.  At the end of the movie, I let him get up and dance during the credits.  It was a great success!  I've been afraid to try it ever since.

Well, this past weekend, we decided to give this another shot.  Monsters University was playing and AMC Theaters had a sensory-friendly viewing.  Basically, what this means is that the lights aren't down all the way and the movie isn't as loud.  It also means that it's full of our people, which made it the coolest.

The boy didn't behave nearly as well for this movie as he did for Pooh.  First of all, unlike the rest of the family, he's not obsessed with Monsters, Inc.  (I love this movie.  I'm a Disney Dork.)  Secondly, the movie was longer than an hour.  Finally, he'd outgrown the monkey backpack.  (Oh, how I miss putting my child on a leash!)

But you know what?  It was fine.  He talked during the movie and asked for snacks, and nobody cared.  He got up and changed seats, and nobody cared.  He ran out of the theater, and as I chased him back in, he was laughing hysterically, and nobody cared.  In fact, one dad smiled at me and raised his coffee cup in salute.  (Sensory films are shown at 10 a.m.)  Even after the show, when he took off for the arcade so fast his too-big shorts dropped around his ankles, nobody said a thing.  These were our people. 

(A word of warning--the only thing that wasn't sensory-friendly was the extremely loud hand-dryer in the bathroom.  Some patrons were a little unhappy about the noise.)

But all in all, it was just so nice to go out as a family and do the type of thing that other families take for granted.  It was a cute movie.  It was a great crowd.  The kids laughed loudly and yelled at the bad guys and applauded when good things happened to Mike and Sully.  It was a little slice of our normal, and no dirty looks.

Here's the link to participating theaters and the schedule for upcoming sensory-friendly films.  Maybe I'll see you there!

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.

The $22 Temper Tantrum

We generally avoid the mall.  It's 40 minutes away, noisy, and full of my students.  But there was stuff we needed to get and I had a coupon.

I sometimes bribe the boy with the promise of french fries if he behaves.  He wasn't too awful, but we didn't stay long.  (He let us know it was time to go by prostrating himself on the floor in front of a jewelry kiosk.  It was awesome.)

We got out of there and went to lunch.  We thought he'd be happy.  This time, though, it wasn't french fries that he wanted.  He wanted to go to the "Star Store," or Toys R Us.  (There's a star in the logo, so there you go.)  OK, eat your french fries, and we'll take a quick walk through the Star Store.

Ha-effin-ha.

So my husband and the ten year-old waited in the car, and I took the boy into Toys R Us.  He didn't wander or look around.  He didn't notice the gigantic Monsters University display.  He walked with purpose, making a beeline to the action figures.  He hadn't been there in months, but he seemed to know exactly where to go.

The Phineas and Ferb toys.  I took a quick look, and thought, OK, good.  Nothing he doesn't already have.

Ha-effin-ha.

He picked up a set of figures with a little car.  $22.  He hugged it to his chest.

"I want Phineas and Ferb toys, please."
"Yes, sweetie.  You have these at home.  Let's put this back."
"I want Phineas and Ferb toys!  I WANT PHINEAS AND FERB TOYS!"
"You have these at home."

This effin' thing.

But he was inconsolable.  He threw himself on the floor, clinging to the toy, and moaning, "Box, box, box!"

That's when I realized just how badly I'd screwed up. See, it didn't matter that he already has these toys.  It also didn't matter that he doesn't actually play with most of them.  See, what mattered is that these Phineas and Ferb toys were in the box.  He wanted them, but he was not going to get them.  I'd be damned if I was paying $22 for a box.

I somehow got the box away from him and marched him out of the store without having to resort to the fireman's carry.  I was so jazzed by this minor victory that I ignored the people staring at my sobbing son.  I set my face in an expression that I'll call "determined serenity"--if there is such a thing.

By the time we got in the car, he was in full-blown tantrum.  He was screaming, sweating, and kicking the back of my seat.  The funny part is that while he was rhythmically and savagely kicking my seat, he was screeching, "PLEASE!  PLEASE!  PLEASE!"  Good manners!  Then he noticed that our car was moving away from the store, and belted out, "GO THIS WAAAAY!  GO THIS WAAAAY!"  Our 10 year-old pointed out that he sounded just like Steven Tyler, and I about burst with pride.  Not only did he handle his brother's meltdown with humor, but he also made an Aerosmith reference.  Excellent!

Eventually, the boy wore himself down enough that my husband and I could hear each other over the screaming.

"I didn't want to set a precedent.  And I sure as hell didn't want to spend $22 on a box," I explained.
"No, you did the right thing," my husband replied.

Just then, the boy took off his shoes and flung them at the dashboard.

"But you know," my husband continued, "whatever money you saved on not buying the toy, we will more than make up for in alcohol consumption tonight."

Doing Right By My "Typical" Kid

I am so lucky.  I have two beautiful boys.  One of them, J, you've heard about.  "The Boy" is five, has autism, and often sets the tone for the house. He's hyper and loud and funny.  You've heard all about his crazy hijinks.

But he's not the only one.  My 10 year-old, N, is the unsung hero of the house.  He's had his room trashed, his homework ripped up, and his sleep interrupted by his brother.  He rarely has both parents in attendance at baseball games and scouting events because one of us has to watch the boy.  He's had to leave playgrounds and parties early because of meltdowns that weren't his own.  He's given up his favorite shirts and hats because the boy wanted them so badly.

He didn't sign up for this, but he doesn't complain too much.

When we're out at the beach or the playground, he runs interference between his brother and other kids.  At the lake, he warns newcomers to the dock.

"This is my brother.  He likes to push people into the water.  He doesn't mean anything by it.  Just say 'quiet hands' and he should leave you alone."

He's a master of redirection.  At the dock, for instance, N realized that what J really wanted was to hear a scream and see a splash.  So, with his friends, he made a game of it.

"Use your words, J.  Do you want me to jump in?"
"Yes!" 

And N and his friends would do screaming cannonballs into the water, and the boy would laugh delightedly.

Those are the good days.  On bad days, nothing works and we go home.

My older son is the de facto Autism Ambassador to the neighborhood.  He takes it in stride.

"Why does your brother make those noises?"
"He has autism.  It just means he's happy."
"Why does your brother do that thing with his hands?"
"He does that when he's excited."

He's also fiercely protective.

"Dude, your brother is weird."
"Yeah?  You're weird, too.  He has autism.  What's your excuse?"

He's so good at this, but he's just a kid.  N has some attentional issues himself, and often does some pretty boneheaded things.  We try not to freak out when this happens.  "Just think before you do something, pal.  I need you to think," is a common refrain in our house.  We don't want to put too much pressure on him.  When he leaves his saxophone on the bus, I don't say what I'm thinking.  I don't yell, "Get it together, man!  You are our only hope!  You will have power of attorney over all of us one day!  The fate of this family is in your hands!"

That's a bit too much for a 5th grader.

We try to make sure that he feels special, too.  The whole family turns out for his school concerts--grandparents, great-grandparents, aunts and uncles.  He has a rather loud cheering section at his games.  My husband and I also take him out to movies without his brother.

I worry that it's not enough.  Can I really say that taking him to Iron Man 3 makes up for the fact that every restaurant decision is based on whether or not there are gluten-free options?  Or that a secret ice cream cone after a baseball game compensates for the thousands of times I will drag the poor kid to the zoo this summer?

I worry that I'm screwing up my first born.  But then he'll say something like, "Mom, if being a major league baseball player doesn't work out, I think I'll be an occupational therapist."  And then I feel better.

For a little while.





 

Whatever Keeps You Off the Front Page: "Coping" with Autism

Last summer, after a particularly rough evening involving screaming and kicking and a soupçon of fecal smearing for good measure, I grabbed a bottle of rum and went out to my kids' swingset.  I pulled out my phone and texted my best buddy, Deb.

Me:  "Dude.  I'm getting drunk on the boys' swingset."
Deb:  "Whatever keeps you off the front page."

Debbie's wise like that.

It's good advice.  I've recently become friendly with a mom whose son was just diagnosed.  She's in the "Holy Shit" phase of all of this.  She's reeling from the news and dealing with family members who are in denial.  She asked me to meet her for a drink because she mistakenly believes that I've got my shit together.  I do not have my shit together.  (The shit is smeared everywhere.  N'yuck, n'yuck.)  But talking to her got me thinking about what's keeping me from losing my ever-loving mind, at least temporarily.

So, in no particular order:

1.  Exercise.  (Don't get excited.  I'm not going to preach.)  I'm not remotely athletic, but about a year before the diagnosis, I did my first triathlon.  That gave me such a boost of confidence, that I figured I was up to any challenge--even autism.  (Granted, I had no effin' idea how hard it was going to be.)  I still race in the summer, though I don't have time to train like I used to.  But I do meet my friend Dana at kickboxing once a week.  It's very satisfying to beat the crap out of a bag for an hour, and it makes me feel badass--probably because there's nothing punching back.

Exercise is great and gets your endorphins going, but before you start thinking I'm well-adjusted, let me tell you about something I like even more:

2.  Alcohol.  I'm not being remotely ironic here.  I medicate with chardonnay.  Cheap chardonnay.

3.  Friends.  My oldest girlfriends are probably the only non-ASD parents that I can be totally open with.  They are awesome at not pitying me--probably because they know what a jerk I am.  I am awesome at not envying them--probably because I know how fucked up they really are.  (I say this will all the affection in the world.)  We don't get together nearly often enough, but even the occasional weekend at the shore is an effin' tonic for my nerves.

4.  My husband.  I know.  I'm lucky.  Though I have to say, sometimes we can't vent to each other.  There have been times that he's wanted to talk about his feelings and frustrations, and I've cut him off because I can't take in any more.  I've reached critical mass.  I'm soaking in it.   But I have a partner in this madness.  And he can cook.

5.  Downton Abbey.  At least I don't have to worry about the pressures of maintaining a castle that's been in the family for generations.  We live in a three bedroom ranch that was built in 1981.  However, it does need new windows, so in that way I can relate to Lord Grantham.

Holy crap.  What was that?  Did I mention the alcohol?  Do you see I wasn't joking?

5.  This blog.  You.  All of this wonderful networking and communication has made me feel like I'm not the only one.  Sometimes I'll read a blog or one of your comments and be amazed because someone has read my mind.  It's the best thing I've done for myself in a long time.

I think that's the key.  We have to have something for ourselves.  We can't just be ASD parents all the time.  We can be writers or artists or mediocre athletes...whatever it takes to keep us off the front page.

For the Families of Mikaela, Drew, and Owen.

When my son was two and a half, he "got out."  He was playing in the fenced-in yard with our dog when the phone range.  I knew the gate was locked, so I ducked in to answer the phone.  The phone wasn't where it usually was, so I had to look for it a bit.  After several rings, I answered it.  It was a telemarketer.  I hung up and went back outside.

I wasn't in the house a minute, but it was long enough.  The boy and the dog were gone.

My heart stopped.  He wasn't playing in the cars, he wasn't in the driveway.  Which way did he go?  Panicked that I would lose time, I jumped into the car and went up the road, screaming his name with the windows down.  I pulled up along side some guys working on a truck.

"Please," I begged.  "Have you seen a little boy?"
"He went that way," one of them said, pointing up the road.

Sure enough, there was my boy marching purposely in the direction of the lake.

The fucking lake.

I caught up with him and squeezed him so hard.  Ohmygodohmygodohmygod.  What if?

To this day, I still don't know how he got out.  My husband was furious that people saw him walking by himself and nobody stopped him.  But if they had stopped him, then what?  He couldn't say his name or where he lived.  What could we do to keep him safe?

I aged about 20 years that day.  We all have stories such as these.  These close-calls.  These luckiest-days.

We have ASD families around us who, through no fault of their own, weren't so lucky.  They are grieving and living our worst nightmares.  I wouldn't know what to say to them if I saw them.  Nothing anyone could say could make any sense of these tragedies.  My heart hurts.

We can't bring back Mikaela or Owen or Drew.  But, for what it's worth, we can stand by their families.  We all try so hard every day to keep our kids safe.  These parents were just like us.  They had locks and alarms and ID tags and everything else that we have to try to keep our kids out of trouble.  They loved their children as fiercely as we love our own, and worried themselves sick, just as we do.  But sometimes, despite our best efforts, tragedy strikes anyway.

I want them to know that we know they're good parents.  That it wasn't their fault.  As our beautiful children walk fearlessly toward the water, we do everything we can to stop them.

They did everything they could.  We know this.