Dys-funk-tional Play

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

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

My kid doesn't play.

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

The boy wants none of it.

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

I'm about to glue my fingers together.

This isn't playing.

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

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

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

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

How to Stay Married on Two Hours of Sleep

Note:  I am a caring nurturer, a member of an online support group, but not a licensed therapist.

Friends sometimes ask how we do it.  With all the stress and pressure and lack of sleep, how do we make our marriage work?  When asked this question, I smile and take another sip of coffee and say, "Sorry, I spaced out for a bit there.  What was the question?"

The truth is we fuck up all the time.  Hopefully, we learn from it, and find new and inventive ways of fucking up.

The sleep issue goes way back.  One of the first major meltdowns we had over sleep was when our older son was a newborn.  My husband is a very heavy sleeper--nothing bothers him.  I, on the other hand, wake up when a moth farts on a tree outside.

One particularly awful winter night, the baby was crying and crying and I tried everything to calm him down.  Diaper.  Bottle.  Swaddle.  Unswaddle.  Rocking, singing, and pacing the floor.  Nothing worked.  I was reaching the end of my patience when I remembered the words of the nurse: "No baby ever died from crying."  I needed a break.  I put him down in his crib and went to my husband for back-up.

"I need your help.  He won't stop crying," I said.  My husband continued snoring.
"Please, wake up!" I begged.  I shook him.  "I need help!  He won't stop crying!"
"All right!  All right!" he yelled, and rolled over and put the pillow over his head.  Meanwhile, the baby continued wailing from the other room.

I was furious.  I decided I was going to dump a bucket of ice water on the bastard if he didn't get up.

"WAKE UP!" I yelled.  He kept sleeping.  Fine, then.  Ice water it is.  I grabbed hold of the doorknob and yanked the door of our bedroom open, only to discover that the hinges were loose.  The door came out of the frame and landed on the top of my bare foot.

"OWWWW!" I shrieked, and let go of the door.  There was this huge BAM! as the door went crashing to the ground, the baby cried louder, and I hopped up and down on one foot, cursing and crying.  My husband didn't stir.

"WAKE. THE FUCK. UP!"  I grabbed the first thing I could find--a water bottle--and hurled it, not at him, but at the window next to him.  The glass, which was not double-paned, shattered.  January wind and snow gusted into the room.

My husband stirred a bit and opened one eye.  "Did you open a window?"  he asked.

"No, I broke the window, and the door, and if you don't get up, you're next!"

     *     *     *

We've gotten better since then.

Still, it's hard.  We both work outside the home, so there's no opportunity to nap during the day.  And as hard as it is to care for a sleepless newborn, at least they're not mobile.  They don't wake up and jump on the dog.  They don't butter the couch and cover themselves with every bandaid in the house.  They don't climb the furniture, break lamps, or go outside to fetch handfuls of snow to put in our bed.  Sleepless ASD kids are just harder, and it's too easy to get exhausted and angry, but we do our best.  My husband and I have guidelines that we try to follow, and we're both guilty of violating them.  I'm here to share our "wisdom" (whaa-whaa-whaa) with you.

1.  Take turns. Duh, but a lot of people don't.  The key here is to have shifts.  It makes no sense for you both to be popping out of bed every 15 minutes.  Try to have shifts so that each person isn't on duty all night, and you both can have some sleep.  We generally do two-hour blocks.  Any more than that can be scary.

2.  Work out the schedule ahead of time.  We hardly ever do this, but it works when we do.  For example, last night I knew it was all on me.  My husband had to get up early this morning, and we have no school, so it was my job.  (Last night was so effin' miserable that I've already told my husband that tonight I'm taking two Tylenol PMs and going on soma holiday.)

3.  When you're on duty, protect the sleep of your partner.  Besides keeping your kid safe, that's the most important thing you can do.  Who's going to relieve you when you're burnt out?  Close the bedroom door and take the noisy kid somewhere else.

4.  Don't be a fucking martyr.  When it's your turn, and you hear a noise, get up and take care of it.  Don't throw the covers back in a melodramatic fashion and go stomping out of the bedroom.  (See Rule #3)  Don't come back in the bedroom and rant about whatever the kid is doing wrong.  It's your turn.  Don't grumble about how hard your life is.  You both live in the same house.

5.  Ask for help when you need it.  Sometimes patience runs out before your shift does, and you need help.  Sometimes you walk into a perfect storm of smeared poop, maple syrup, and dog vomit.  When these things happen, and you're going to lose it, ask for help.  And Sleeper?  Get up.  This is an emergency.  (See Rule #4) 

6.  Say "Thank You."  It's really important.  I cannot overstate this.

When things go well, we can laugh about his exploits the next day.  When they don't, we know we're in this together.  We pour the coffee and hug it out and hope for a better night soon.

Autism Travel Log: Philadelphia, the City of Brotherly Shove--Part 2

This is the continuing story of a somewhat hellacious weekend trip with the family that I began here.

Yes!  We arrived at the hotel and found my husband, looking clean-shaven and dapper, waiting for us.  The boys ran up to him as if he were the hero they were waiting for.  Daddy, Daddy!  It's Daddy!  Hey, Dad!  Dad's here!  Mommy, who had driven them, put up with them, and bought them food, was forgotten.  I didn't care, because I was thinking, He's here!  He's here!  Thank God!  Maybe he has a glass of wine for me!

Peep Show!

We brought our stuff up to the room, and I immediately noticed a problem.  The window in our room
faced into the atrium of the hotel.  For some people, such an arrangement would be weird or a little cool, but for the mother of a perpetually naked child, it was going to be a challenge.  I mean, he might as well hang a picture frame from his waist and announce, "Conventioneers and members of the wedding!  Behold my junk!"

We were going to have to keep clothes on him.

But first, the pool!  Yes, let's chill these whiners out with a dip in the indoor pool.  Oh, what an idea!  They were happy for the first time all day.  Please don't splash Mommy.  I just had my roots done.  Do you think brown hair just grows out of your head?

My husband's ONE JOB in planning this whole trip was to find a restaurant for dinner.  He's a chef, a foodie, and is great at finding just the right place.  He knows our requirements.  Any restaurant we go to must serve french fries, ice cream, and chocolate milk.  The restaurant is preferably a little noisy, so we don't disturb other diners, and has booth seating, so we can keep the boy in a seat.  Unbeknownst to me, my husband must have taken up crack-smoking, because he made a reservation at a charming and quiet English pub, with no children's menu, no milk or apple juice, and no ice cream.  The seats were short stools.  It was a disaster.

"I wanna go to Pennsylvania!" the boy cried.  Me, too, buddy.  Me, too.

We went down the street to the Franklin Fountain, a really cool old-fashioned ice cream shop.  They housed their giant sundaes.  They were happy for the second time all day.

We returned to "Pennsylvania", which is the boy's word for the hotel, with the hope that he was worn out enough to sleep.  No such luck, alas.  He refused to settle down.  First, he wanted to sleep with his brother.  Then he decided it would be more fun to shove him off the bed.  So I made him lie down with me.  I scratched his back, and just as I thought he was drifting off, he stood up and took a flying leap onto the other bed where my husband and Big Bro were sleeping, and kneed my husband in the pills with all his weight.

I settled him down again, and must have fallen asleep for a bit, because I woke up to him shaking me and saying, "Take it out, Mommy.  Take it out, please."

"Take what out?" I asked.  He responded by shoving my fingers in his mouth.  He wanted me to pull out his tooth.

"I'm not doing it, dude." I murmured, and fell asleep for real.  I awoke in predawn hours to the sound of the boy singing.

"Peanut butter...we love peanut butter!"  I opened one eye, and felt around on the bed for him.  I found a bloody tooth, but no boy.

"Peanut butter!  That's what we like best!"   Where was he?  Not in the other bed.  Not in the bathroom.  But then where...?

"Do you like it on your head?  Yes, we like it on our head!"  I followed the sound of his voice to the curtains, and saw two bare feet between the curtain and the window.

Oh, God.  No...

Oh, yes.  There he was, butt-naked and singing, pressing his genitals against the window in full view of a very resigned-looking janitor who was vacuuming below.  The boy turned to me and grinned, his glasses and missing tooth making him look like a deranged jack-o-lantern, and continued his song.

"On your head?  On our head!  OHHHH!"

And that was just the first night.

My Kid Sucks At Puzzles...and other spectrumy things he doesn't like.

We've all heard the saying, "If you've met one child with autism...you've met one child with autism."  Still, it seems there are some common threads that bind our kids together, and it's so great to find another parent to whom you can say, "Your kid, too?!"  But there are some pieces that don't fit for us.

Puzzles.  My boy shows no interest.  He was all right with the wooden puzzles with individual pieces, but once those pieces had to fit with one another, he gave up.  Big Bro was a fan of those floor puzzles, so we have a lot.  I've tried to engage him--especially with the alphabet puzzle--because I want to provide some kind of structured activity at home, but he balks.  He barely looks at them, and then tries to mash the pieces to make them fit.

At one point, I actually said, "Dude!  Aren't you supposed to be good at this?"  Then I laughed and scolded myself, and poured a glass of wine.
 
I find it amusing that the puzzle piece is supposed to be the symbol of autism, and my kid hates them.  If I had to develop our own personalized symbol of autism awareness, it would be a decapitated Disney figure, but perhaps that's too macabre for the general public.  I doubt people would buy car magnets or get tattoos of something that looks like the work of Sid from Toy Story.

He's not that into trains.  He shows a mild interest.  He likes to watch the Thomas the Tank Engine video while jumping on a trampoline and shouting the names of all the trains, but that's about it.  He has a little wooden train set his therapist tries to get him to build for some functional play, but it's not a passion.

$6 ticket. He lasted 10 minutes. That's 60 cents/minute of fun!

There's a model train museum about 30 minutes from our house, and I'll take him from time to time.  Sometimes we'll stay for 10 minutes, sometimes longer.  The "museum" is in a little strip mall, and the owner has set up a really lovely display.  He also has religious showcases and anything else that strikes his fancy.  What I find hilarious about the whole situation is that this man, who is very nice, has absolutely no idea that he has built Autism Graceland.  When I take the boy in there, the only other people I see are other moms and other flapping boys.  And the owner tries very hard to encourage the kids to look at his display of bicentennial memorabilia, and seems a little confused by the jumping and humming and flapping.  He never says a word about it, though.  He's good people.

The boy doesn't like Legos, either.  I wish he did.  I wish he showed an interest in something other than breaking my house.

You know, I used to hear these stories of kids on the spectrum who obsessed over a certain toy or puzzle or collection or, I dunno, a pair of socks, and were absorbed for hours.  Understandably, their parents were concerned.  But I can't help feeling a teensy bit jealous.  My son has nothing that keeps him occupied for five minutes, let alone an hour or so.  I can barely imagine what it would be like to have time to pee by myself.

 


He doesn't line up his toys.  Like ever.

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!