Thursday, November 4, 2021

Gonna be a looooooong night.....

 My existential angst is likely as bad as it's going to get. That's the good news.

The bad news is fuuuuuuuuuuuuuuck, what was I thinking?

So once upon a time there was this mom, who had a little guy whom she knew right out of the box was different. She didn't know how or why, just the fact that he was going to need a lot more than your average baby.

She wasn't wrong. This baby needed to be physically connected to her at all times. He nursed to the point of throwing up. She ended up doing a lot of things she never thought she'd do because she desperately needed sleep and needed to think about how she was going to get through a day.

She learned why on a sunny August day--what her sweet little guy who struggled so much with literally everything had a name--autism.  She spent subsequent weeks walking the woods and wailing, always at carefully timed intervals because she couldn't show or share her grief.  She vowed no more kids.

Then God laughed. Number two was on his way.

More tears.  More scrambling. Getting services in place, questioning, second guessing, people telling her what they thought she was doing wrong (they all had lists), and lo and behold, there were now two, and the new one was quietly observant, almost as if he knew what was going on and why he was here.

His presence was a respite--a gift.

But, it wasn't long before he had his own set of differentials and they became obvious to the world.  So mom realized she had two fronts of a battle she never expected to be fighting, but here we are, let's get it done. 

But it wasn't a battle--it was a war. 

And the battles were pretty much endless.

Starting with general education. Maybe also ending there, I'm not sure, since this story is still being written. 

Anyway, the older guy.  So. I had the best of intentions--the goal was always competitive full time employment. But to get there, he needed to run the gauntlet of a society that doesn't take kindly to differences of any kind. He withstood all kinds of failures of the adults around him to help him navigate bullying, the adults who led by example that it was okay to mess with the autistic kid and then gaslight him by telling him and his mother that his classmates were only trying to "help" him.

Fuck you.

Anyway. Middle school and early high school are pretty much the same story until I call a meeting and tell the team "Look, he does NOT want to be alone at lunch. Please help him!" So they do, and they have a group of girls who look upon him as a project of sorts, so he has people to sit with. 

But these relationships do not extend outside of school. 

He wants to take the senior trip; he gets a couple jobs and pays his own way. His friends play "let's pretend N  isn't here. "  He laughs. But even four years later, the laughter is uncertain. It's easier to think that the joke was in fun and not personal. 

Still. He goes forward. He walks with his class. He goes to community college and votech. He gets a competitive internship. 

Then, COVD hits. His jobs shut down. So does his way forward.

We're trying to restart.  We're trying to stop the backslide and move forward again. But it's feeling pretty bleak right now. Even though he was invited to join Phi Beta Kappa, he doesn't feel worthy.  Graduation is in a month. Then what?

I fought hard, for a long time, expecting, perhaps wrongly, that we'd get him where he needs to go. 

Failure was never an option.

But.  What if that's all there is?

(We all know it will be my fault, because that's just the way it is.)

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