Charlie informed us last week that he no longer gets out of the left door of the van. Ever. Sorry, nope. He will only exit to the right, thank you very much.
We learned that he is repulsed by the red booster seat and refuses to touch it, or “chutch” it (Truman’s word for “touch”). Truman, fortunately, doesn’t have a problem with either the left van door or the red booster seat.
But Truman does have a problem with lots of other things. Like the bubbles in the bath. He wants them there, but he doesn’t want them sticking to his legs.
When he eats breakfast, he wants a blanket wrapped around him—tightly wrapped, yet not hindering his arms whatsoever, so making this happen is lots of fun. He rejects most food when it is not a dinosaur nugget or dry cereal in a sandwich baggie, because he likes his meals beige and portable.
With three of my people now officially on the autism spectrum, the breadth of rigidity issues our family sees playing out daily is stunning. Jack can’t walk past any dishes soaking in the sink without pouring the water from all of them. He literally can’t even. Charlie requires multiple hugs and kisses before bedtime, and must inform me when it’s “last hug and kiss.” Of course, I like this one.
Charlie doesn’t walk through the house anymore. He parkours. You know when Charlie is coming because he thuds, leaping from the stairs to the rug, to the other rug, to the kitchen. He sometimes crashes right into people who are standing on the rug where he is aiming to land, because he’s looking at his feet; also, because landing on the rug is more important than not jumping on your mom or your brother. Picture yourself jumping from rock to rock to cross a river. Same concept in Charlie’s world. Get out of the way or this eight-year-old Jason Bourne will take you out. Good news is that his parkour thuds wake me up in the middle of the night if he tries to sneak in and get the iPad from my room.
Truman eats sausage patties, but won’t eat sausage broken into bits as it’s cooking. No way, José. Jack wants to go for a ride when he gets home from school, no questions asked. Because it’s the routine, duh. Can’t take him on that ride after school for one reason or another? “Okay, fine. Have it your way,” says nonverbal Jack, as he throws dishes, urinates on the bathroom floor, and crams toothbrushes into heat vent. Show, don’t tell, writers say. Jack shows.
You have to ask yourself in these situations, at what point do we require flexibility? When do we compel a kid to try doing something a different way in order to learn to cope with change? When do we give in to a kid’s request, simply because it’s the routine and that’s the way he wants it, even if it isn’t working for the rest of us? A good follow-up question is, how much screaming are we willing to subject ourselves to? As Jeff likes to ask, “Do we want to die on this hill?”
The answer seems to differ from day to day and one situation to the next. I have no definitive answers. But I have noticed a growing resilience in myself when the menacing twin horsemen of the autism apocalypse, Rigidity and Anxiety, rear their neurotic heads.
Ever since my non-ironic (i.e. life-changing) spiritual journey began last spring, I don’t feel guilt about this autism business. The idiosyncrasies don’t freak me out so much anymore. They make me shrug, yes. But the hypersensitivity to transitions and routines, the sensory mania—they aren’t my fault. Nor are they the boys’ fault. There is no blame in this equation, which I think I tried to squeeze somewhere in there before.
Nor do I respond to my kids’ neuroses with my own primeval panic that this is the never-ending path of heinousness our lives will eternally follow.
I have begun to feel neutral. I can roll my eyes at the behaviors and let it go, rather than escalating it with my own fear and despair.
I am the calm in the face of the guys’ storms. Jeff has been good at this for years. I am only now learning it.
But what caused this seismic shift, you might ask? How do you stay cool and peaceful when it’s a hot mess all around you? What about when you’re stuck in the fear/panic/despair trough of a wave, which is surrounded by more choppy waves? What about all those years before, when I was praying and trying and hoping but still suffered?
Perhaps I needed to have years of desperation to understand relief when I finally found it.
People have asked me how I undertook my spiritual journey. You guys, it was basic: therapy, prayer, exercise, gospel study, meditation, going to the temple, and paying attention to my dreams. I think the difference this time, from all the many other thousands of times I tried all the same things, was that I decided to accept anything God gave me.
I decided to accept anything God gave me.
I believe the years of compounding hardship brought me to this point.
Where I was rigid before, now I was pliable.
“Tell me what to do, God, and help me do it. I am ready.”
We both were.