Friday, December 27, 2013

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.)

Sunday, November 24, 2013

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.

Sunday, October 6, 2013

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!

Sunday, September 22, 2013

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?




    

Friday, September 13, 2013

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.

Tuesday, August 13, 2013

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.

 

Monday, August 5, 2013

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.

Tuesday, July 30, 2013

Eating Candy on the Toilet: The Obligatory Potty-Training Post

Some people are awesome at potty training.  My friend had her daughter out of diapers at two.  Two?!  Can they even understand what's going on at that age?  I'm not a potty training guru.  When my older son was ready to be trained, I made a little chart with star stickers, and there were prizes involved.  He was good, but not terribly consistent at 3 1/2, so I resorted to threats.  We were planning a Disney trip, and I told him that they didn't allow boys in diapers to meet Mickey Mouse.  That did the trick because kids are dumb.
Hey, he tried, right?

But how could I possibly train my spectrumy son?  He didn't care about stickers or understand delayed rewards, so what could I do?

I read a lot of books, but two in particular helped me a great deal:  Ready, Set, Potty! and Toilet Training for Individuals with Autism and Other Developmental Issues.  These authors seem to really understand what we're dealing with and offer success stories that gave me hope.

I learned that it's best to toilet train in cold weather, because it's harder to monitor fluid intake in the heat, and we sweat a lot of it out, anyway.  So if you're trying (and failing) to potty train your kid this summer, take heart.  You're not doing anything wrong.  It's just not the best time.  The books recommend a long weekend, like Thanksgiving.  (We did President's Day weekend, and it worked just fine.)

Sometimes kids don't want to even go in the bathroom.  Perhaps they were traumatized by earlier attempts at training and avoid that room altogether.  Brenda Batts, author of Ready, Set, Potty!,  recommends decorating the bathroom in a theme the child likes.  She tells the story of one boy who was afraid of the bathroom until his parents decorated it with a Christmas theme.  They even put a little tree in there, and the kid was allowed to put an ornament on the tree as a reward for using the toilet.  (Great idea, but can you imagine?  And years later, do you think they kept the "toilet ornaments" separate from the rest?  But, hey.  Whatever works.  Good on ya, folks.)

The big issue I faced was with motivation.  The boy didn't care that he was getting too heavy to pick up and put on changing tables.  He didn't recognize that his peers were already using the toilet.  He was not interested.  We were reading Once Upon a Potty, and watching the DVD, which is cute, but has a really irritating song at the end.  (It also features babies way too young to be potty training, which made me feel worse, but the boy didn't care.)  He liked the book and video, but not enough to want to emulate Joshua.  I needed to motivate him with something he really liked...

Candy!  Yes, I did it.  Food is generally not recommended, but I did it and it worked for us.  I bribed my son with M&Ms.  At first, I gave him an M&M for just sitting there for a little bit.  Then he got one when he peed.  He eventually worked his way to two M&Ms for #2, and oh, what a happy day that was!  I think I called everyone I knew.

So he would go when I asked him, but he didn't voluntarily use the bathroom, and he was very inconsistent.  I was afraid to get rid of the diapers, but I knew it was the next step.

Ready, Set, Potty! suggests making the switch to underpants a special event.  The boy had just discovered the joy of birthday parties, so we decorated the bathroom door and the bathroom like a party.  I mean it--streamers, signs, balloon cut-outs, the works.  We also put some Phineas and Ferb decals on the walls.  The bathroom became his favorite place.  (Note:  We had to be careful to place the decals only where they could be seen from the toilet, or else he wouldn't stay put.)

Now, the choice of underwear was an issue.  Lots of helpful family members bought him cartoon underwear as motivation.  For kids on the spectrum, however, this can be confusing.  If I tell him, "Don't pee on Perry the Platypus" and there's a Perry the Platypus on the front and back of the underwear, he can pee himself in good conscience because the Perry on the back is still dry.  So I made my own special underwear for him.  I bought pack of plain white briefs, and using fabric markers, I put balloon and candle designs on the front.  (See?  A theme!)

This represents the sum total of my artistic ability.

And then we had a Potty Party.  I shit you not.  (Pun intended.)  I baked a cake and wrapped the underwear in festive packaging.  Then I made my parents and in-laws come over and sing, "Happy Potty Day to You."  We made a big effin' deal about this.  No more diapers.

So what happened next?  Lots of clocks and charts and reminders.  I took pictures of every step and made a social story book.  We worked with his teacher and had toileting strategy sessions that rivaled those of Roosevelt and Churchill planning D-Day, but in our case it was P-Day.  (Ha!  See what I did there?)  We switched to mini M&Ms and eventually faded that altogether.  He slept in a pull-up at night for a long time.  But he got it.

I still need to supervise him, because he skips the steps.  He doesn't wash his hands unless I stand over him, and he still can't effectively wipe his own butt.  But he hardly ever has accidents because he always tells us when he needs to go.  (He has no qualms about dropping trou and peeing outside just about anywhere.)  I still decorate his underwear, although the cartoon one became easier for him with
time.

Fun with Stampers:  The Underpants of Fear
The photocard I used to make his potty book is now in one of those digital frames in our dining room.  I never erased the pictures.  If you come over for dinner, you just might be treated to an action shot of the naked boy taking a whiz.

We are very proud.

Thursday, July 25, 2013

The Effin' Camping Trip

Wouldn't it be great if we took our family camping at the beach?  Let's cram four people into a tent on one of the hottest weekends of the year.  

You know what would make it even better?  If one of those people had autism!  

Hey, well, we're in luck because it just so happens that we have a five year-old with autism right here, and he doesn't sleep!  Bonus!

Yeah, we did that.  We thought it would be a cheap and fun beach getaway.  We are fools.

We visited Gateway National Park in Sandy Hook, NJ.  My husband, the Eagle Scout, used to go there with his troop, and was psyched that the campground was finally open to the public.  

“It’ll be awesome,” Effin’ Daddy said.  “We can even visit the Nike Missile Site!” 
(I don’t know about you, but I love mixing family beach vacations with scary reminders of the Cold War.)

Sooo much nicer than a hotel!
So after many stops and starts along the way, we arrived at the beach.  I’m not even going to get into the story of the beach right now.  It needs its own post.  Yeah, it was as stressful and irritating as you might imagine.  So by the time we made it to the campsite, we were already exhausted and pissed off.  I immediately noticed that our campsite was right next to that of a lovely couple who were clearly enjoying some relaxing quiet time.  They were reading books, living on spongecake, watching the sun bake, and we were about to ruin their glorious peace and quiet.  The boy made a beeline for their picnic table, but before I could stop him, the woman stood up.

"Hey, buddy!  How are you?" she asked.  "Can you tell me your name?  High-five!"  She got down on one knee and held out her hand.  She knows, I thought.  And she did.  A special needs teacher, she wasn't the least bit bothered by the noise or the fact that the boy made himself comfortable in her camp chair.  It was kismet. 

That was fortunate, because for the camping fun to begin, we had to get the tent up.  I left that to my husband and our older son, the Boy Scout.  The Boy Scout thought this would be a great time to second guess every decision his father made.  

 "Dad, we shouldn't do it that way.  Scoutmaster says--"

"I know what Scoutmaster says!  I also know what I'm doing here!  I was an Eagle Scout!"  (Did I mention that my husband was an Eagle Scout?  He was an Eagle Scout.)

So while they were arguing over, I dunno, everything, the boy kicked off his shoes and ran like he was being chased.  As I searched for his crocs, I heard him yelp.

Is this really necessary?  An effin' cactus?!
"Owowowow!" he whined.  That's when I noticed that there were cacti everywhere.  Really, New Jersey?  Cacti?  Who do you think you are, Arizona?  That's just putting on airs.  So now the boy had stepped on a cactus, the other two were fighting over the tent, and I just wanted to go home.

"Let's not cook," my husband suggested.  "I know a good burger and taco joint in the area.  How does that sound?"  Effin' a, yeah.  Get me out of here.

(Long story short, this "joint" was not a joint, but the kind of place that serves shrimp cocktail in a martini glass.  It's not the place for people who look like they're about to sleep in the dirt, which we were.  Whatever.  Gimme eat.)

Bedtime wasn't as bad as I'd expected.  We had three cots and a little Winnie the Pooh air mattress our friends loaned us.  The boy loved the mattress.  He went to sleep without much fuss.  I rolled up one of the rain flies, and as I drifted off to sleep, I could smell the sea air.  

This isn't so bad, I thought.  It's even kind of nice.

And then, just as I was feeling really drowsy and cozy, I felt a knee to my gut.  It was the Boy Scout, tripping over me on his way out of the tent to pee.  In my opinion, he peed too close to the tent.

OK, let's try this again.  I'm relaxed and sleepy and...

"I want the sheep movie!"  The boy was up.  Frak.
"We don't have the sheep movie."
"I want Handy Manny!"

This was bad.  My husband tried to calm him down by scratching the boy's back, but only managed to coax himself to sleep instead.

"I gotta go potty!"
"Fine," I said, feeling around the tent for my flip-flops.  The floor was covered in sand. "Let's go."  

I went to lead him to the bathroom, but instead, the boy dropped trou and attempted to pee on the tent.  I turned him around and he enjoyed seeing his piss arc sparkling in the moonlight.  The boy loves to pee outside.

I lead him back into the tent, and was hit with the stench of three gassy men who'd been eating tacos.  While I'd been struggling to sleep, they'd been farting up a storm.  Sigh.  I went back out to open another rain fly before I suffocated.  Gasping for air, I stumbled over the tie-line and fell hands-first into a cactus.  Cursing quietly, I tied back the rain fly and swatted at the mosquitoes that swarmed me.  They were not impressed by Deep Woods Off.  

Back in the tent, I was sitting on the edge of my cot and picking the cactus needles from my hands when I felt someone kick me.  It was the boy.  He had taken over my cot.

"Mommy, off!  Off, please!"
"That's Mommy's bed.  You sleep on your Winnie the Pooh bed."
"NO!  Want Mommy's bed!  Mommy on Winnie the Pooh!"  And then he was out.  I tried to move him, but he was too heavy.  It looked like I was sleeping on the dirty floor of the tent.

Are you effin' kidding me?  


The ground was hard and lumpy, but there was no way I was going to sleep on the Pooh mattress without breaking it.  I tried to sleep on top of the sleeping bag, for cushioning, but the bugs were devouring me.  It was about this time that I started fantasizing about hotel rooms.  I'd have loved a really nice one with fluffy pillows, but under the circumstances, I would have settled for a motel with ugly bedspreads and a loud air conditioner.  It was bad.  I felt like crying.  I sat up and slid inside the sleeping bag, which was on the ground between the cots of my snoring, farting family. 

Sitting up put me at eye level with my husband.  I watched him snore contentedly for a moment.  Then I leaned over and whispered these words into his ear:

"I hate camping, and I hate you."

Wednesday, July 17, 2013

Epic EEG Fail

I almost had myself convinced that this would work.  The boy was in a good mood.  As an ID aficionado, he was thrilled to be in a hospital where everyone wears identification, and he did indeed check everyone's.  The night before, I showed him pictures from a couple of very helpful blogs so he would have an idea of what was going to happen.  I had promised him that he could watch any movie he wanted during the test.

Erin, the child life specialist at the hospital, demonstrated how to attach electrodes on a doll, and the boy helped.  When he asked for a movie, I told him he needed to wait until he got his "stickers."  He took the electrodes off the doll and attached them to his own forehead.  I took this as a good sign.

"Movie, please."

The boy was scheduled for an EEG because of all the sleep problems.  His doctor is concerned that he might be having little seizures that are waking him at night.  He also had what may have been a brief absence seizure at aftercare one day.  I had heard a report on NPR about how doctors are being more aggressive with seizures in order to minimize the risk of brain damage.  If my boy was having seizures, we needed to know.  So yeah, I was taking this seriously. 

So he hopped up on the bed, all smiles, and asked for a movie on the iPad.  Granted.  Then the technician began parting his hair and applying some sticky goo to his scalp.  The boy freaked.

"Nooo!" he wailed, and wriggled down the bed.  I held his hand and made soothing noises.

"Hold still, buddy.  It won't take long.  Just watch the movie..."

Uh, yeah.  No effin' way.

After he hit and kicked us a while, we decided to swaddle him.  I was told that many children on the spectrum feel more secure that way, and it's less forceful than holding him down.  Another nurse--a tall, strong man with kind eyes--was brought in to help.  The sheet almost kept his arms still, but it wasn't tight enough, and he was wiggling free.  He was also screaming and sobbing and breaking my heart.  He tossed his head around so the tech couldn't even part his hair.  If we could just keep him still until the electrodes were on, he would calm down...maybe.

There was no keeping him still.  This struggle went on and on.  I gave him kisses.  I sang him songs.  I tried to distract him with promises of ice pops, but to no avail.  My baby was a hysterical wreck, and I was not far behind.  What do I do?  Is this the right decision to hold him here?  He's so unhappy.   But what if he's having seizures and we don't know it?  What if we give up and there's something wrong?  Could I live with that?  Can I live with this--this panicked little boy, crying and thrashing like I've never seen?

I felt paralyzed.  We needed answers, but at what expense?  Wasn't this experience almost as bad as a seizure?  I looked at the nurse and released my grip.  He nodded.

"We're done here," he said.  "This is too stressful for the patient."  I let out a long breath.  .

"Off!  Off!  Off!" the boy yelled.  He leapt from the bed and immediately began pulling whatever wires had been attached from his head.  I cuddled him close and kissed his forehead.  He was sweaty and teary, but he was starting to calm down.  I, however, was not doing so well.  I felt sick and guilty, like I had betrayed my child by putting him through this.  (And also like I had failed him by not actually going through with it.)  I took another deep breath and willed myself to keep it together.  Don't.  Cry.  Here.

Not now. 

 "Are you O.K., Mom?" asked Erin.  And that's all it took.  A simple show of concern for my welfare, and I totally lost it and began crying.  I buried my face in my hands so my son wouldn't see me cry.  I didn't want to upset him even more.

"That...just...really...sucked," I managed to get out between sobs.

"You did a great job, Mom," the nurse said.  "I've been doing this for 30 years, and he's only the second patient who's forced me to quit.  He's strong.  That's good."

I looked at the clock.  The struggle that seemed to have gone on for hours had lasted only about 15 minutes.  I was drained.  It was time to go home.

And that's that, I guess.  We're going to follow up with his neurologist, but we're not trying this again unless he's totally willing.  I was worried that he'd be upset or scarred for life, but he was himself as soon as it was over.

He's even looking forward to seeing the dentist.  But let me tell you something--if we get to the dentist, and he doesn't feel like opening his mouth, he doesn't have to.  I don't effin' care.

    
                                                                                  

Friday, July 12, 2013

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.

Monday, July 1, 2013

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!




Sunday, June 23, 2013

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.






Sunday, June 9, 2013

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."




Saturday, May 25, 2013

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.





 




Wednesday, May 22, 2013

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.