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

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!"

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!