This Ain't Nothin'

A few weeks ago, I was in a community theater show called Moon Over Buffalo.  It's a comedy about a pair of aging stars, a scandal, and backstage hijinks.  Everyone associated with the production--actors, director, costumers, crew--was lovely and supportive and fun.  The audience laughed.  A good time was had by all.

I'm so glam.

This was huge for me because I was doing something for myself that I loved and hadn't done in so so long.  Theater used to be a huge part of who I was, and it had all but disappeared from my life.  I hadn't set foot on stage in 12 years.  Friends congratulated me and then asked the inevitable question:

"Weren't you nervous?"

And here's the surprising answer:  Not at all. 


I couldn't have been more surprised by my total lack of nerves.  Back in the day, I would pace frantically before the show, fighting off the urge to puke.  Once I got on stage, I'd settle down, and eventually have fun.  But beforehand?  I would be a wreck.  Not this time.  I still paced, but just to get my energy level up, not out on anxiety.  Before my first entrance, I took a breath, turned the doorknob, and walked onstage as if I belonged there.

Like it was no big deal.

Because you know what?  In the grand scheme of things, it was no big deal.  With all the crazy autism stuff I deal with, not to mention teaching snarky adolescents while being a mother to another snarky adolescent, it seemed like putting on a costume and pretending to be someone else was the easiest part of my day.  It was even a relief.

The advantage to being an autism mom is that situations that scare other people are nothing to us.  Our everyday life is so effin' hard that perceived challenges can seem easy.  Face it:  What's easier than being a special needs parent?  Um, pretty much everything.

Whenever I face something difficult, it helps to remind myself that I've already dealt with worse.  So when the Boy had a meltdown in the car the other day because he wanted ice cream and french fries and doughnuts and snow and Santa and Baby Jesus (I kid you not), I knew nothing would placate him.  But I'd seen worse--much worse--so I decided to focus on my breathing.  Breathe in for four....breathe out for four.  Breathe in for four...breathe out for four.  Resist the urge to scream.  Be all zen and crystals and patchouli.  Think about breathing and yoga and Rodney Yee in his tiny hot pants--God bless him--and resist the urge to yell.  And it worked!  I stayed calm.  Eventually, he burned himself out and we went to the park and played on the swings and all was well.

I just have to remember that I've seen worse.

Or, to quote the hobo in Slaughterhouse Five, "You think this is bad?  This ain't bad."*




*All right, if you've read the book, you know those are the hobo's last words, so I may also be making a secret ironic point here.  So it goes.

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!

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.

Thanks for Being Cool

When we take our children out into the world, we have a lot to manage.  We strategize, corral, and buffer, but stuff still happens.  We do our best to teach our children appropriate behavior, we hover, and warn, but they're still our special little darlings doing their special little things.  We're met with mixed reactions.  I'll never forget the time I was trying to steer my boy through a crowd at a Crawfish Festival, and he stole a french fry from a lady who was holding them right at his eye level.  She was not cool with it at all.  I apologized and tried to explain, but she stormed off before I could get any words out.  I will never forget that withering can't-you-control-your-own-child look she gave me for the awful offense of a stolen fry.  It still bothers me that she wouldn't take a moment to understand.

But I'm not here to write about her.

See, I think that lady sticks out in my mind because she wasn't understanding, and I think most people are, or try to be.  Thanksgiving is upon us and I want to take this opportunity to thank the wonderful people who have been calm and understanding when things get a little flappy.  So here's my open letter to just some of those cool people out there:

To the lady in the restaurant whose water glass my son reached into to steal the ice.  Thanks for being cool.  You could tell he was agitated and that we were exhausted.  It was too nice a restaurant for us to be in that day, but you couldn't have been nicer.  You'll never know how great the words, "It's fine!  Don't worry about it" can be to hear.

To the guys in our local hardware store.  Thanks for being cool.  Every Saturday morning, my husband brings the boy in so he can look at the tools and script from Handy Manny.  Sometimes he gets really worked up and runs up and down the aisles at seven a.m., but you never say a word--even the time he went hillbilly hand-fishing in the bait tank.  We love you guys.

To the Spanish-speaking family on the crowded bus that day.  Thanks for being cool.  You were clearly having an important conversation when my son got up in your faces and screamed, "Rojo!"  See, he was learning Spanish in school, and could tell you were speaking it, and that was the only word he knew.  You just smiled and nodded and said, "Si!  Rojo!"  I tried to imagine what it would've been like if the situation were reversed: if I were sitting with my family and a little kid yelled the word "Red!" in my face.  I bet that was weird.

To the man in Starbucks conducting a video conference on his laptop.  Thanks for being cool.  While I may question the wisdom of your conducting a video conference on a laptop in Starbucks, I will never question your awesomeness.  My hands were full of hot coffee when the boy slipped away from me and ran up next to you and became a part of your meeting.  You smiled and said, "Hello, there!"  You could not have anticipated that he would remove your headset, rub your bald scalp, and announce, "Hair is ALL GONE!"  You handled it so gracefully.  You laughed and said, "Why, yes it is," as I dragged the boy away.  I hope your client appreciated the moment and that you landed that new account or whatever it is that people do when they conduct video conferences. 

And to anyone else who has ever held a door, or held their tongues, thank you.  If you walked past a meltdown without passing judgement, thank you.  And even better, if you've taken joy from the joy my son finds in the world, thank you.

Thanks for being cool.

Understanding the Autism Dialect

When I was in my early twenties, I spent a month in Germany visiting a friend.  It was a challenge, since I took French in high school and college.  Because I hadn't studied German in school, I tried to prepare myself by listening to a tape in my car and repeating the phrases.  The tapes were helpful in that I learned to say, "Es tut mir leid. Ich spreche wenig Deutsch."  (I'm sorry.  I speak little German.)  When I arrived, I used that phrase a great deal.  I was overwhelmed and a little sick, and nothing on the tape told me how to say, "I need a laxative, please."  (German food, I tell you.)  But eventually I became more comfortable, especially once I learned, "Ich möchte ein Bier, bitte."

Ein Dulcolax, bitte.

I realized that if I paid really close attention, I mean really close attention, I could get the gist of a conversation, even if I couldn't speak the language myself.  I watched facial expressions and body language, picked up on enough words that sounded like English, and tried to follow along.  (Unless I drank too much bier, which made me start speaking French for some reason.)

The point is, to understand another language, you've got to pay close attention.

I'm sometimes reminded of that trip when I'm trying to understand what the boy wants.  When he's struggling to make his needs known, I feel like a baffled German pharmacist confronted with an inarticulate, constipated American.  The boy can usually tell us what he wants, but when he speaks with an autism dialect, we have to pay close attention.

For example, we were leaving the mall one afternoon, when out of nowhere, the boy started shrieking.  We were already in the car, and he was crying and pointing in the direction of the mall.

     "Dis is hahn!  Dis is hahn!  I want dis is hahn!" 
     "Honey, I don't understand.  Please tell Mommy what you want."
     "I want dis is hahn!"

I had absolutely no clue what he meant, except whatever he wanted was back at the mall.  I was about to throw up my hands and drive away when Big Bro had an epiphany.

     "Dis is hahn?  This is hot?  Do you mean, 'This is hot'?"  Big Bro asked him.
     "YES!!!" the boy wailed, half-upset and half-relieved.
     "What are you talking about?" I asked.
     "He wants to go to Red Robin.  When we were there last, the waitress put his food down and said, 'This is hot.'  I bet that's what he means,"  Big Bro explained.
     "Really?  You got Red Robin from dis is hahn?"  But I drove over there anyway.  When the boy saw the sign, he immediately stopped crying.  Big Bro was right.  He was the Hero of the Day.  He understands the dialect.

Last night, I had to deal with another interesting meltdown.  I had taken the boy out for a little bit to hear some live music.  He'd had a wonderful time dancing around in front of the band, and didn't argue when I said it was time to go home.  But on the way home, he began weeping as if his heart were breaking.

     "Go see Kelly?  Want to go see Kelly, please!"

Who is Kelly? I wondered.  I mentally ran through a list of his new aides and therapists and classmates, but there was no Kelly I could think of.

     "Is Kelly on your bus?"
     "NOOOO!  Wanna go see Kelly, please!"  Kelly who?  Unless...
     "Do you mean Kelly from Handy Manny?" I asked.
     "YES!"
     "Great.  Well, we'll go home and watch a Handy Manny video, okay?"
     "NOOOO!  Wanna go SEE Kelly!"
     "How are you going to go see Kelly unless you watch the vid---Wait a minute.  Do you mean the hardware store?  Are you asking to go to the hardware store?"
     "Yes!  I want to go to the hardware store, Mommy!" 

They have such chemistry, these two!  I don't get out much.

That was it.  Going to see Kelly means going to the hardware store.  (If you're unfamiliar with the show, Kelly is the woman who owns the hardware store and always has exactly what Handy Manny needs.  I appreciate the portrayal of a woman in a male-dominated business.  My husband keeps wondering when Manny and Kelly are going to hook up.)  Anyway, I felt like a genius, like effin' Sherlock Holmes, for reasoning that one out.  Of course, the hardware store was closed, but I promised to take him in the morning.

The point is we have to pay close attention.  Always.  The boy makes these connections that are so obvious to him, and we have to work so hard to keep up.  But it's worth it.

Footnote:  Early this morning, my husband took the boy to the hardware store just as it opened.  The boy was thrilled.  He ran up and down the aisles, yelling, "Hola, Kelly!  ¿Cómo estás?"

Oh, yeah.  That's another thing.  He's learning Spanish in school.  Did I mention that I took French?




    

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.