“I said, sometimes it’s hard to be flexible mom!”

We’re talking about the possibility of going sledding later, but first I have a call in to the salon where I had my hair cut yesterday. Not sure what the deal is, but this is the second time I’ve come home with a lopsided ‘do, and it’s driving me nuts. I don’t go for asymmetrics.

Going with the flow. It’s not so easy for Jonah (or me for that matter). The both of us need warning when our plans (meaning, the way we think in our brains that things are going to go) are about to change. Trouble is, we’re the only ones privy to our plans, brain-ways being a pretty personal thing.

Fast-forward one month (that would take us up to yesterday).

I arrive at school to fetch Jonah. Almost immediately things go awry. I’ve brought an extra lollipop for J’s friend B, and as I’m offering it to her, his friend N pops around the corner. I couldn’t very well not offer N a lollipop, but it’s J’s lollipop, and I know I’m screwed. I go ahead and do it, prompting a dramatic conversation with J about why I don’t have a lollipop for him. I explain what happened—he was present for the interaction with B and N—but it still doesn’t make sense to him. Why don’t I have a lollipop for him? Little comfort is provided by the fact that there are three big bags of lollipops at home. I gave his away. I don’t have one for him NOW.

This lack of elasticity is a hallmark of autism, and in Jonah’s case, it extends beyond his thinking to his emotions and body. His muscles are all tension, persistently on high alert. At the ready, he can run, jump, spin or climb in an instant. But I am grateful he can voice his frustration, even if he’s unable to intercede on his own behalf.

Back to the lollipop breakdown. He proceeds to walk hunched over, head hung low, stomping out his frustration far ahead of Gabriel and I for at least half the walk home. In a “typical” kid, this behavior could be classified as bratty. A tantrum. There’s probably a little bit of that here, too. But.

I am coming to understand that such disruptions cause Jonah real mental discomfort, even pain. His body bears the load. Never mind how many times I explain the situation; his mom gave away his lollipop. I try to talk about sharing with friends, about delayed gratification (though I don’t use those words). Nothin’ doin’. I have to watch myself, because my initial reaction is to discipline him for being a brat. His behavior drives me nuts. But he finally returns to me—lamenting that it had been “a terrible day”—and I begin to understand why the lollipop was such a big deal. Turns out it was one more letdown/change in a day full of letdown/changes to his normal routine.

Here’s the lowdown:

1. Sickness has been rampant at school. J and another student were the only kids to be in class all week. The peer landscape of his classroom was different everyday, and it was driving him crazy.

2. He had made several valentines for his secret valentine, and his secret valentine wasn’t at school on Valentine’s Day.

3. He did not himself receive any valentines from a secret valentine (which very well could have been because so many kids have been sick).

4. His teacher was sick, and there was a sub.

5. I forget to include the sweetheart tart candies I’ve been putting in his lunch for several weeks.

6. A friend brought cookies. Jonah loves cookies, but he hated these and “had to throw them in the trash!” Huge letdown.

7. His substitute teacher told him he needed to “fix” his self-portrait “a little” (wish I could have been there to hear what she actually said). This frustrated him, and he threw the portrait in the recycling bin to begin a new one. Thankfully, he retrieved said portrait from the bin and brought it home anyway. And yes, I love it.

Follow all that up with me giving his lollipop away, and his behavior makes infinitely more sense. When I know that a day is going to hold many uncertainties (like exactly when we are going to go sledding or if the girls across the street are going to be able to play), I can help prepare J. We talk about Superflex, a made up superhero in a social skills curriculum he participated in a few summers ago. Superflex takes on the Band of Unthinkables, helping to come up with flexible solutions, and in turn, helping change the way our thoughts control us. Unthinkables include Rock Brain (gets stuck in the way he thinks things are supposed to be), Glass Man (prone to shattering meltdowns and reactions) and  Space Invader (makes you invade other people’s personal space). These guys make sense to J, and when he knows a change is coming, he’s much better at adapting (or at least not melting down).

I’ve spent a good portion of my adult life trying to learn to welcome interruptions to my self-imposed schedules. Sheer willpower isn’t very effective. The only thing that’s made a dent is daily bombardment. Having two young, rather demanding, children perpetually wanting me to see something or do something (“I can’t pull my pants up!” “Need a huggers!” “More juice!” “Need a kweenex!”) has beat a certain flexibility into me (with the help of low dose SSRIs).

Jonah’s struggles are more intense than mine. I think about the people who will love him in his future. I pray they will be patient enough to get to the soul of his reactions. What seems like a destructive measure of self-involvement is really a disability, one that he’s been living from his beginning. It’s a downside and the inverse of a dozen upsides. What I can do is help him into that awareness. The work will be his own.

superflex filtered sharp





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