Renewing My Vows

Sometimes I need a wake-up call.

Last week Nigel attended a Scout meeting, which he does about twice a month. There are four Scout meetings scheduled per month, but he can only handle two, so that’s what we do. He has been around most of these boys for a few years now, and they do the best they can to accept Nigel’s idiosyncrasies, or at least tolerate them. Most of the time, he gets through a meeting with minimal disturbances, and so I develop a sort of complacency.

Nigel had a bit of a hard time at the meeting last week, and I couldn’t figure out why. I sat on the sidelines, with a few other parents who attended, and kept an eye on him, hoping he wouldn’t get out of hand. He kept talking out of turn, interrupting leaders who were speaking, getting in kids’ faces to spout movie echolalia, making noises, and generally not participating. Generally not functioning very well. I was convinced that he had forgotten to take his medication that morning. That has to be it, I thought. Usually, if we forget his medication in the morning, by evening he is disruptive and exhibits the behaviors I described. I kept looking at the clock, hoping he would not become unmanageable, and finally the meeting ended and we went home without any major catastrophes.

When we got home I immediately checked his pill container for the day. It was empty. He had taken the medication in the morning, so it wasn’t that. What then? What had caused him to become so disruptive in a familiar environment with familiar people? And then the alarm went off in my head. My wake-up call.

This is what autism does. This is what it has always done, since he was a toddler. There are some things you can predict, some behaviors you can prevent, but some you can’t. And there will be some things, plenty of things, you can’t understand. I know this. I’ve lived this. This is autism, and it’s the reason why he acts the way he does. And medication helps, dietary changes help, and therapy helps.  Advocacy helps. Awareness helps. But it’s still there. It’s still autism.

So I dig my heels in a little deeper. Eleven years post diagnosis, I choke up on the bat, I go deep, I open my eyes a little wider. I renew my vows. We’re in this for the long haul. I know I won’t always feel strong, but I do now, and it feels good.

4 thoughts on “Renewing My Vows

  1. Fearless Females

    I loved this post!! This is so true, there is a sort of complacency and then the “shock” when things don’t go so smoothly–we forget about autism for a little while, but then that can be good too.

  2. kristi

    I catch myself looking for reasons too. Sometimes I feel we need to try the gluten free diet but other days I don’t feel I can do it! TC has been really calm lately…and he eats basically the same things everyday. So I just don’t know!

  3. mama mara

    I just read your last several posts, and I was struck by how similar we are in the ebb and flow of our thoughts. I can let a few really good days convince me that Rocky is “growing out” of his autism, but then reality (a meltdown, a social misstep, a regression) gives me a little smack. And at these times, I either fall apart or I get stronger. Or both.

    Re one of your earlier posts, I think the term “high-functioning” autism is a misnomer. Rocky can appear normal and sometimes function quite well, but he can also appear completely autistic and be unable to function at all in other settings. Maybe “mixed-functioning” would be a more useful way to look at our boys.

  4. Tanya Savko Post author

    Mama Mara, I totally agree about “high-functioning” being a misnomer. For a while I had referred to Nigel as “mid-functioning,” but that didn’t always feel correct. I like your idea of “mixed-functioning.” It fits.

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