resigned

Henry got sunburned this week.

This is good news. Henry was out in the sun long enough to get sunburned. Even though he was wearing sunscreen. Just like the rest of the kids at L's house. Today looks to be the 3rd day this week they'll spend at the pool, and come home worn out and hungry. That pool pass I bought might actually have been a good idea.

So we take some steps forward.

Sometimes, on the other hand, we feel stuck in one spot. Take graduation day, for example. As you may have gathered from the family photo, Henry was not being very cooperative that day. Call it dysregulated, call it oppositional, call it difficult, call it autistic. Whatever you call it, it's pretty ding-dong frustrating.

Oh, we brought books and Leapsters with us to entertain him- I didn't just become a mom yesterday. But the thing is, on an occasion like graduation, all bets are off with Henry. I think he's reacting to several factors:
-A new situation. Never been to a graduation before. (The location, however, was quite familiar. The high school, middle school, and Henry's elementary school are literally connected in one big campus. Graduation was in the stadium.)
-Boredom. It was hard to hear much of the ceremony, and Henry wouldn't have been interested even if he could hear it.
-But there was too much distracting input for him to just zone out with a book
-Heat
-And this is a biggie- emotion. I think Henry can sense when a situation is highly emotional, and he doesn't like that vibe. It makes him uneasy. So it becomes his mission to make the rest of us uneasy :-)

So he started right in with stepping on our feet, pinching us, squeezing our fingers and hands, trying to push us off the bleachers. All the relatives tried their best to help by asking him questions, etc.- trying to distract him. (Amateurs.) It didn't take long before I left with him and walked around the school and over to his playground. That was fine- I actually was initially glad to have the distraction. It kept me from sitting there just thinking and reflecting and making myself cry.

But I did want to actually see Kate walk up and get her diploma, so we ended up back in the stands, straining to hear each name as it was called. Henry settled on a new method of torture: pressing his forehead against my jaw with all his strength. I just let him do it- it kept him quiet. We sat that way for quite awhile, until all of a sudden the heat of his head against my sweaty face got to me, and I realized what a bizarre little scene we were making.

"Henry, why are you doing that?" I blurted out. (Questions like this are totally pointless, and are usually met with "Why are you doing that?" shouted back at me.)

But this time he calmly replied "I'm the invisible man" and went right back to pushing against me. I have no idea what that meant, but it broke the tension and made my sister-in-law and me both laugh.

By the time we were taking the pictures, a few half-hearted attempts were made to get Henry to turn around, but I think everyone knew it was a lost cause. It is what it is- a moment in our family's life preserved for history. (Bill did capture him before heading home, waving out of Grannie's sunroof.)

I want to think of a better word than resigned. I want to say we are resigned to life with autism, except I want that to sound more positive.

Here's another example: that same weekend we went to a backyard party for a friend (but we did not know the people who were hosting the party). Henry marched right into their house and asked for their movies.

This probably would have embarrassed me a few years ago, and I would have spent all night trying to get Henry to stay outside with the other kids. But now? Now I don't miss a beat- I just explained that he'd like to examine their collection of Disney movies, would probably lay them all out on the floor, and would want to watch one. I didn't apologize and I didn't even explain that he has autism.

He's just my kid and this is what he likes to do to be comfortable and that's what you get if you invite me to a party. (Not that I get invited to many parties.) Later I found him in the daughter's room, rummaging through her bookshelf, looking for Disney books. That's not appropriate behavior. But I'm just too tired to fight it anymore.

I don't know whether that's something to be proud of: I accept my son the way he is and everyone else should too.

Or whether it's something to feel defeated by: Autism has worn me down until the inappropriate has become appropriate, or I can't tell the difference anymore.

Maybe both are true, depending on the day and my mood.

(This post ended up sounding mopier than I really intended. Sorry. My allergies are making me feel crappy and we are getting ready for a biggish out-of-town trip that has me a little stressed. Happier post next week about the super-fun wedding we'll be attending in Virginia...)