Autism Travel Log: Philadelphia, the City of Brotherly Shove--Part 1

I've been a mom for eleven years, so I should know by now to keep my expectations low.  When Big Bro was born, I planned to breast feed.  I had images of serene bonding time with my angelic newborn.  Dressed in a white eyelet nightgown, with my hair cascading in long, flowing locks, I would relax in a white wicker rocker with my baby suckling contentedly, as the sun crept in through the gauzy curtains.  The reality was louder and messier.  He wouldn't latch on, neither of us could stop crying, and the whole thing ended with me standing topless in the kitchen, applying cold cabbage leaves to my tits.  (It's not as sexy as it sounds.)

So I've learned a thing or two about expectations versus reality.  But I really thought I wasn't crazy to imagine a fun and educational trip with my family.  After all, we'd had a very successful trip to DC six years earlier.  The boy cooed and giggled in the baby carrier and Big Bro was charmingly interested in everything.  Let's do it again!

Only now my adorable older son is eleven and turning into a surly tween, and his brother cannot be confined to a baby carrier.  But eff it, we're going anyway.  Philadelphia, here we come!

My husband was working in Atlantic City and would join us later, so I had to drive the three and a half hours with the kids by myself.  Three and a half hours of whining, seatbelt unbuckling, and fighting over leftover Halloween candy.  Three and a half hours of cursing my husband under my breath for getting to drink and gamble, while I dealt with the bitching and eye-rolling.  Three and a half hours to wonder if this was such a good idea.

Effin' tigers are so cool and nobody cares.

But I was determined.  The Philadelphia Zoo, you guys!  Check out all these amazing animals! 
Tigers!  Look at the tiger!  I said, look at the tiger!  It's right effin' there.  Will you look at the effin' tiger for eff's sake?  I did not drive all this way for you to look at pigeons.  French fries?  Are you kidding?  You just ate.  Fine, I'll buy you $6 french fries, but then we are looking at some effin' animals.  Ice cream?  It's freezing.

"I wanna go to Pennsylvania!" the boy wailed.
"We ARE in Pennsylvania," I insisted, but he was having none of it.

How about the carousel?  Yes, the carousel was good.  How about the train?  I bought train tickets before seeing the actual train, which was a glorified golf cart with some wagons attached to it.  It just went in circles.  Big Bro and I went with him, and made snarky comments about the scenery.  The boy made choo-choo sounds, so we thought he was liking it, until we disembarked and he made his next demand.

"I wanna go to Disney World!"  Translation:  This place is not cool.
"We're not going to Disney."
"I wanna go to Pennsylvania!"
"We're IN Pennsylvania!"  Effin' hell.  Time to meet my husband at the hotel.

After much hectic driving through city traffic and begging for some cooperation and/or quiet, I pulled the car up to the hotel, at which point the boy cheered, "Hooray!  Pennsylvania!" 

That's when I realized that Pennsylvania means hotel. 

(Note:  A whole lot of other crap happened, but nobody has the attention span for long posts, so I'll write a part 2.)

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.

ASD Cribs! Or, Lifestyles of the Stressed and Shameless

Hi!  Welcome to our Autism Home!  The Boy is here to greet you, too.  Honey, where are your pants?  Remember our rule.  We wear pants for guests.

Come in, come in!  I'll give you the tour.  This is our living room.  Have a seat!  Yes, the couch cushions are on the floor.  That's how we like it.  Feel free to put one on the couch if you prefer.  To each his own.  This is our entertainment center.  Yes, that is a genuine tube T.V.!  It was the last one PC Richards sold before switching to flat screens.  We like it because when he bangs on it with his Handy Manny tools, he can't do much damage.  Notice the hand-prints?  We think they really personalize the space.

So, if you'll just step over the trampoline--doesn't every living room have a trampoline?--I will show you the rest of the house.  And by the way, would you like to see his box of decapitated and dismembered Disney figures?  He has quite the collection.  I think it just goes to show how remarkable he is.  Other kids just play with their toys.  My son bites their heads off.

What is that, you ask?  Is that an original Jackson Pollock?  Alas, no.  It's just our wall, splattered with chocolate milk.  The boy did it all himself.  I know, right?  He has a real creative streak.  We think he might have a future in action painting.

The magnet covers scratches!

And this is the kitchen.  Can I offer you some iced tea?  Great, let me just find the keys...Well, of course we have appliance locks on the fridge and freezer!  How else can we keep him from buttering the couch?  Not that we want to stifle his creativity, but you know how it is...butter on the couch cushions, couch cushions on the floor...it can be a bit of a bother.

Now if you'll follow me down the hall...No, I can't turn on the light.  We took the light bulb out of the fixture in the hallway because he would turn on the lights in the middle of the night and wake us all up.  He still wakes us up, but at least he doesn't hurt our eyes!

These walls were,well, redesigned when we foolishly thought we could keep him in one part of the house using baby gates.  How silly of us!  He's just so gosh-darned determined.  But we really like the effect.  It's like our own little homage to the great crumbling villas of old Tuscany, or...what's that other place?  Pompeii?  Wasn't that the city that was destroyed by a volcano?  Yes, like that.

This is our bedroom.  Yes, we love the "shabby chic" look!  It's taken us years to achieve it.  You see, when my husband and I got married, we bought nice things.  Then we got a dog and had children, and voila!  All that tacky newness and "cleanliness" has worn away and we have this look.  It's more authentic that way, don't you think?

The bathroom--decorated in beautiful Disney decals!  Yes, we do have soap, but we have to hide it, or else he'll squeeze it all into the sink.  Don't walk barefoot in there.  The boy is trying to learn to pee standing up.  Practice makes perfect!

Here is Big Bro's room.  He has a slide-latch on his door, but as you can see, the boy used an overturned wastebasket from the bathroom as a step-stool so he could unlock it and get in.  How clever!  It doesn't worry him that the wastebasket was full.  Don't worry; the dog will get that.  So yes, Big Bro's room--oh, look!  They're fighting!  Let me just close this door...

Hulk Smash!

And now, the pièce de résistance!  The boy's room!  See how we sawed his door in half?  We did that so we could keep him from wandering in the middle of the night.  But, as you can see, he hulked out during a time-out and ripped the door apart.  So strong!

So, that's the tour!  I'd show you the yard, but the gate has a lock on it and I can't remember the combination, so you'd have to stay forever.  Tempting, I know.  Hey, why don't I take a warm bottle from the broken wine fridge, and we'll chillax on the floor in front of some Raffi on VHS?  The party just never stops around here!

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?




    

Autism Dress Code

Many kids have "lovies" they get attached to.  Whether blankets or stuffed animals, they are prized possessions to our kids and therefore, prized possessions to the parents.  We know all hell would break loose if something were to happen to them.  The house is burning down!  Grab the kid and blankie and go!  When my older son was two, he loved his Elphie.  Elphie was a stuffed elephant with matted fur and hardly any trunk because the kid loved to chew on it.  Elphie was also absolutely rank because I was never allowed to wash it, but my son didn't mind.  He slept with Elphie on his face.  He adored Elphie.  So when Elphie went missing on Christmas morning, I actually prayed to God.  Please, God.  I would trade all of the presents just to get Elphie back.  Help me find Elphie, God.  We found him in the Christmas tree on New Year's Day.  But for that week between Christmas and New Year, my son did not sleep.

This effin' thing is in sorry shape.

That was Big Bro.  My ASD kid is a little different.  He obsesses on clothes.  A few years ago, he took a liking to a couple of his brother's Phineas and Ferb shirts and made them his own.  They were so big, he'd wear them like dresses.  He'd wear one and carry the other around like a security blanket.  I'd have to wait until he got in the tub to wash them.  Then the boy caught on to my scheme and decided he didn't need to take baths anymore.  Then he'd want to wear them to school.  I had a dirty, smelly kid in some dirty, smelly shirts, but his teacher was kind enough not to judge.

Every once in a while, the shirt obsession rears its stinky head, and I'm back to the cycle of laundry and deceit.  

Sometimes, the boy will obsess on something and make other people follow his dress code.  This responsibility usually falls to Big Bro.

     "Wear green shirt from Grandma!" the boy demands.

     "But I don't have a green shirt from Grandma.  Grandma bought me a red one," Big Bro patiently explains.

     "Green shirt from grandma!  GREEN SHIRT FROM GRANDMA!" the boy shrieks, drags Big Bro into his bedroom, and presents him with a t-shirt.  It seems Grandma gave the boy two green shirts and Big Bro will have to wear one, even if it's three sizes too small and makes him look like a Hooters chick.

Sometimes the boy will insist that they wear certain hats.  These hats are almost always a) out of season and b) embarrassing for Big Bro.  

     Oh, we're going shopping for Easter outfits?  Let's wear Santa hats! Oh, you don't want to wear a Santa hat?  Then I'll just throw a snot-flying tantrum.

And he does.  The boy pitches the biggest fit at the worst possible time, and I end up telling his brother, "Oh, for the love of God!  Will you just wear the Santa hat already?  Please!  Do you want to listen to this all the way to the mall?!"

I'm not even going to get into the time the boy tried to make his brother wear Mickey ears to baseball practice.  

I know.  I make it work.

Then there was the time with the effin' bike helmets.  One morning, I was rushing around, trying to get ready for work.  I knew I was going to be observed that day, so I wanted to get my power-teacher look just right.  My hair wasn't cooperating.

I heard a knock at my bedroom door.  I opened it to find the boy standing there, butt naked except for his bike helmet.  He held my helmet out to me.

     "Mommy, put helmet on, please."

     "Honey, Mommy can't right now.  I'm getting ready to---"

     "PUT HELMET ON, PLEASE!"  he wailed.  

A pair of dress shoes appeared behind the boy.  I looked up to see my husband, all suited up for work, wearing a bike helmet and a look of total resignation.

     "Just put on the fucking helmet," he whispered.  

So I did.  And you know what?  We went about our morning routine--all of us wearing bike helmets.  My husband bumped his head on the cabinets while making breakfast--"Good thing I was wearing this helmet!"--and the boy had to wear a button-down shirt because he wouldn't remove the helmet so we could pull a shirt over his head.  But it was all right.  I left for work in a good mood with a happy, well-protected family.  

And my observation went well, despite the helmet hair.

Eff You For Not Suffering With Me

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

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

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

Such fun!

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

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

A picture is worth a thousand f-bombs.

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

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

And I was kidding.  Mostly.

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

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

It doesn't make any sense.

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

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

It doesn't make any sense.

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

Which is what he wanted all along.

 

Autism Everywhere-ness

As Autism Parents, I think it's really important to focus on the here and now.  Planning for the future seems exhausting, frightening, and pointless, which is why I hate, hate, hate when people ask me these questions:

"Will he ever be able to hold a job?"
"Do you think he'll be able to live independently when he's an adult?"

Are you fucking serious?  Look at me.  Do I look like I have the answers?  Look at him.  He's chasing a bird.  Does he look ready for career orientation?

When we first got the diagnosis, we made all sorts of plans.  The neurologist told us that he's had patients that have gone on to college, and we said, "That'll be him."  Our plan was to work our butts off so he could be mainstreamed in time for kindergarten.  So we worked our butts off, and here we are, four years later, and he is nowhere near ready to be mainstreamed.  He's not even going into an inclusion class. 

If I think about that too much, I'll cry.  So I'm done planning that far ahead.

But sometimes I can't help but think of the future.

Yesterday, we had a bit of respite.  I ran a triathlon at the shore in the morning, and my in-laws had our kids.  It was a perfect beach day, so my husband and I decided to take advantage of the ocean time without having to worry about anyone drowning.  We waded out into the water and were floating around for a bit when we both became aware of this very familiar humming sound.

It was the sound the boy makes when he's excited and a little scared--only in a much lower register.  We looked to our right, and there was a man in his early thirties, holding hands with a woman who was clearly taking care of him.

"Oh, look!" she cried.  "Maybe your brother will come swimming, too!"  And on the shore was the man's twin brother, who dipped one foot in the ocean, turned, ran up the beach, and collapsed into one of our chairs.  The woman with the brother pulled on his arm.

"No, that's not your chair," she told him as she guided him back to the water.  I wanted to tell her it was fine if he sat there, that it's cool, we get it.  But we were too far away, and I didn't want to make a scene.

Autism is everywhere.  Do other people not see this?

We went back to our beach chairs and I tried to relax, but I kept watching the two brothers bobbing in the waves.  I wondered what their lives were like.  Who were the women?  Where they family or caregivers from a group home? 

"Relax, Mel," my husband said.  "When do we ever get to relax?"

He was right.  I needed to relax.  I reclined my chair a bit, and closed my eyes.  That's when I heard the rhythmic, almost frantic, tapping of a shovel on sand.  The man in the chair to our left was working very hard on a sand castle, and giving directions to his family to bring him more water.  His face was serious and his movements were precise.  He had to get it perfect.  I could be wrong, but he was giving off an aspie-vibe.

Autism is everywhere.

The women to our right were complaining loudly about the sandwiches they'd ordered from the deli.  The twins were splashing in the ocean in front of us.  The tap-tap-tapping of the shovel.  I couldn't relax.  I couldn't breathe.

I got up and went back to the water to soak my feet.  My husband followed me.

"Are you all right?"  he asked.
"It's just...is this our future?  Are we going to be 60 years old and chasing our adult son around the beach?"  I felt the tears coming.
"You need to let go," he said.
"I know.  And I feel selfish for even thinking like this.  It's so exhausting and scary to think about it."
"That's why we don't think about it.  That's why we take it day by day.  Now go take a nap."

So I did.