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 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.


  1. You just made me cry. Thank you for voicing this, I have these feelings so often myself.

    1. I try hard not to think about the future and to just get through today. While my son is high functioning, VERY verbal, and likely to be able to hold a job (I hope) .... I get it. I see, hear, and cry about the same things. We were just recently told that rather than having Asperger's, our son has a more classic form of HFA, that his SPD *will* cause him issues in a large classroom setting, and that his attraction to all things violent can cause him issues in school as well as live in general. I .. don't even want to think about what that last bit could mean for us.

  2. You took the words right out of my mouth. My son just turned 19 and I still operate "one day at a time"...well 90% of the time. ;P

    BTW...I love your outlook and writing!

  3. I love you and I don't even know you. I feel you.

  4. I just found your blog and can I say I love you? Is that too much? Haha, I have 2 boys with autism and I worry have all the same thoughts. Nice to know I'm not alone.