They say life “goes by in a flash.” But I don’t really think “they” are parents of autistic children. Imagine tapping into your inner Cheryl Strayed and hiking the entire Pacific Crest Trail. I mean, at some point in this decade, you’ve thought about it, right? Now imagine the day you finish after however many weeks (or months). You started in Canada, you walked 2,653 miles, now you arrive in Mexico (or vice-versa). Your mom meets you in Canada or Mexico and says, “went by in a flash, right?” And you say, uhhh…not exactly. Whatever else the experience of hiking the entire PCT was, it didn’t exactly fly by.
That’s your window into parenting an autistic child. I will never, ever be standing at his high school graduation thinking “where did the time go?” No. I know where it went. I feel it in my bones. I feel every sleepless night and every long excruciating day. And they’re not exactly all as beautiful as Yosemite. Especially now that we have new drug protocols, as explained last blog post.
Right now, the amount of days in a year that Dar spends with his mother and/or his father is 365, or 366 during leap years. Somehow, we only very recently learned that we might actually be able to reduce that number. I guess I spent too much time blogging and not enough time listening. Or maybe the rumors I heard sounded too good to be true.
Last week I told you about (among other things) our first night without Dar. That was real. Only since that incident have I been learning that it doesn’t have to be that way. For example, there are overnight summer camps. I didn’t even think any of them could possibly take Dar, but it sounds like some of them can. It also sounds like I learned about this at the worst possible time…if I wanted to get him into something for this summer. I spent a lot of this week calling around. They treated me quite justifiably like THAT parent who only arranges his kid’s summer at the last minute. That’s fair. But next summer could be off the hook. And in fact we may even get Dar into some kind of weekend overnight thingamabob that would take place this autumn. Just to see how he does.
Knowing Dar, he’ll probably do horribly. But it’s worth a shot. How many of these truly, deeply autism-friendly sleepaway camps are there that Regional Center covers the cost of? Maybe four in the Bay Area? Well, let’s see how quickly Dar can get us blacklisted from all of them.
Speaking of adventures, Dar is going on a ten-day one that begins this Friday. This is with his parents in hotel rooms where we will beg him to sleep. I will do my best to groggily post some vacation photos for the blog post next week.
Meanwhile, what about Ali Stroker? If you missed the Tony Awards, she was the one who performed a solo song from Oklahoma! Oh wait, she’s also the first performer who routinely uses a wheelchair to graduate from NYU’s Tisch Drama Department, to appear on a Broadway stage, and to…win a Tony Award. Yeah, I’m sorry, but that’s a big forking deal. Wifey and I watched her acceptance speech with shaking shoulders and tears in our eyes. Dar was also there. I don’t think he noticed.
And I know you know that whenever God opens a musical window, she closes a musical door. In this case, Gary Indiana, Gary INDiana, Gary Indiana…during the same week that Stroker triumphed, I heard about that special-needs teacher in Gary, Indiana (the setting of The Music Man, which is where I got this blog post’s title from) who awarded his nonverbal autistic student “most annoying male.”
Now, get ready to have your mind blown. And I think I might even mean it. I don’t think I’m reacting to this story the way most people would. If some teacher gave that award to Dar, I’m not sure I’d care? Lord knows Dar wouldn’t notice any more than he noticed Ali Stroker’s Tony. Maybe the teacher was using humor to alleviate stress? A minor problem I notice is that Gary, Indiana has a fifth-grade awards luncheon. Oh, I’m well aware that so does everyone else. Just as I’m well aware that when my ancient generation finished fifth or sixth grade or eighth grade, we didn’t get a luncheon or graduation or speakers or awards or any hint of congratulations from anyone we knew. We just moved on to the next year. Maybe the surfeit of participation trophies is, not to put too fine a point on it, annoying the faculty?
I don’t want the kind of teachers who suppress their feelings and tell me that everything is hunky-dory when it isn’t. I’d rather they admit to me that despite their best efforts, my child has caused them to have a bad day. I’d rather have that kind of thing out in the open.
I know, I know, I’m betraying the autism community and the politically correct community…deal with it.
And I know you know that whenever God closes a graduation door, she opens a graduation window. This week, high school kids in Minneapolis voted for the city’s first-ever nonverbal commencement speaker. That is VERY awesome. How did he speak when he’s speechless, you may ask?
That’s a future blog post. Happy Father’s Day, everyone.