Code Black

Mom, code black.

Those are the words that popped up on my phone a couple weeks ago on a Wednesday morning, just a week after the beginning of the new school year.

And here we go again, I thought. Let the games begin.

How long have I been keeping this blog? Six years? Seven? Maybe even eight (though admittedly, these past few years have been scant), and it seems like by now, I would have a copy of this mysterious code book. I mean, I watch enough television to know that "code blue" means someone has stopped breathing, and I'm pretty sure that we had a few "code browns" when Ben was two and learned how to take off his diapers and use the contents to finger paint all over the walls (sorry--should I have posted a trigger warning before saying that?)... But I wasn't quite ready for "code black," though it certainly seemed ominous.

What followed the cryptic warning was nothing short of a narrative straight out of a Laurel and Hardy script--except I couldn't decide whether I was supposed to laugh or cry. I reproduce it here only with small revisions to grammar (because, well, I can't help myself), but the vocabulary and structure is all Ben's own:

So here's what's happening right now. I'm in the counseling office, post-controlled meltdown. I was in Digital Literacy. I was picking at my lip (I get it--bad idea, shouldn't have done it, you don't need to mention it). It started to bleed intensely. I ran to the tissue box, but it wasn't enough. So the teacher sent me to the bathroom, where I was washing my hands and washing the scab on my lip (still bleeding a lot), and everything was all swell. I was just standing there by the sink while pressing a paper towel to my lip, waiting for it to clot. Then, out of ALL the days and ALL the times, a fire drill went off. In the bathroom, so small, plated with tile, the only opening being a door followed by another door, the screeching was MUCH louder than usual, not to mention that it echoed, A LOT. It basically put me into shock. I sprinted through the doors and back to my classroom, with my lip still bleeding, barely clotted at all, a paper towel still pressed against my lip. We headed out to the soccer field. I was wanting SO badly to break down on the ground sobbing, but I didn't want to make that kind of impression on my new classmates, so I held back the tears and kept standing. We kept standing out there for I would guess 10 minutes in the 90 degree heat. I was extremely sweaty. We finally went back inside. And now I'm here.

So. That is apparently a code black.

I asked him what he needed, and he said that a lunch break would help, and I said I would come down to the school and take him out. After lunch, he went back to his afternoon classes (yes, of course he suggested that since I was already there, maybe we should just go home, but when I said no, he didn't resist).

Here's what's remarkable about code black:

• It wasn't the end of the world. It was hard, and then it was over.
• It was a learning experience, for Ben and for me. Ben discovered that he could get through a few challenges and move forward; I gained new appreciation for Ben's strength, wit, and insight.
• It marked a milestone of progress and growth. Only a year ago the bleeding lip alone would have been enough to put Ben into a meltdown and require me to pick him up.

I'm liking Ben in black. He began to demonstrate this new maturity at the end of the last school year (8th grade) when, as we were driving home from school he commented, "Mom, I don't think I'm emotionally ready to begin high school yet. I think I should repeat 8th grade again next year."

It was like a light illuminated the whole car. I had spent the past month in turmoil, worrying about the widening social and emotional gap between Ben and his 8th grade peers. I knew that moving into 9th grade--high school transcripts that colleges would review in a few years--could be disastrous. But I just didn't know what to do about it. And suddenly, there was the answer. Let's repeat 8th grade, and take another year to catch up on skills Ben still needs to be successful.

So that's what we're doing this year. Ben is repeating 8th grade, though he doesn't have to take all the "core" classes again, because he passed those last year. So he is enjoying his classes, and learning to work in groups, and developing new study and organizational skills.

And apparently, amazingly, he's learning to manage a code black.

The Final Frontier

I'm waiting for the phone to ring; I fully expect that it will within the next hour. Why? Because Ben is on an overnight (I use that term loosely) Space Camp mission that began an hour-and-a-half ago and is supposed to run all night, and all day tomorrow, while the Space Camp folks rehearse the week-long missions they will run this summer. Ben, who is an avid participant in his school's "Astro Knight" program (i.e. Space Camp), is supposed to be flying this mission with all his classmates so they can work out the bugs.

I started getting texts about half an hour ago:  It's too dark. It's too stressful. It's too hard. I can't do it. I'm already crying.

I have offered him every bit of wisdom and counsel I know: Take a little break. Eat a little snack. Say a little prayer. Just have a little fun!  Apparently if he does any of these things in small doses, it makes a difference.

It won't work. He will call soon, and he will come home without actually participating in this activity that he insists he loves so much. And I will resist the ever-present urge to compare him to the other kids at the camp who won't be coming home tonight, and who will have the emotional and mental stamina to endure a little discomfort and stimulation.

So, this is where I struggle to separate fact from fiction. The truth is, Ben uses his autism as an excuse to avoid things he doesn't want to do. We have a bit of the "Little Boy Who Cried Wolf" syndrome going on, especially when he is supposed to be in a class he doesn't like, read a book that doesn't interest him, or fulfill a responsibility he'd rather not do. He knows the words that will send me reeling to his rescue (they are akin to "I can't breathe" in mother-speak), and darn if he isn't due an Academy Award for his ability to burst into tears when the words alone are not enough. 

The problem is, maybe he isn't faking it. Empirically, his autism does indeed mess with his wiring, and so it's altogether possible that he really can't do it. He's very possibly experiencing something like fireworks exploding inside his head while I encourage him to eat a cracker. What kind of mother does that?

Well, the kind that just desperately wants her child to be like other (neuro-typical) children. That's the bottom line.

The kind of mother who isn't willing yet to throw in the towel. 

The kind of mother who believes that her child has infinite potential.

The kind of mother who doesn't want her child to live with regrets.

The kind of mother who believes in enduring to the end.


And, the kind of mother who is struggling to acknowledge that her child does have limits, and...more and more often these days...seems to be reaching them.

I don't believe that Ben's autism should be a stumbling block for him. A challenge? Yes. Of course. Just like any other mental, physical, or emotional disability would present a challenge for any other human being. But I'm not willing to give up, and I'm not willing to let him give up--not without a fight.

He'll come home tonight--I'm certain of that. I'm equally certain that he'll try again, and again, and again until he flies a space mission all night long and into tomorrow. Autism is Ben's final frontier, and Ben's mission is to explore it, chart it, and embrace it for all the challenges and opportunities it offers.

But tonight, right now, he'll come home--and I'll try to be okay with that. Autism is my final frontier, too, and I'm a weary traveler sometimes.