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.