No Rules, New Rules, One Rule

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So last night, the Fourth of July, held a minor victory as our oldest kid did pretty well facing his fear of fireworks. All the kids did pretty well, in fact, with each one showing a little more improvement in the sensory processing realm. Plus, they got to stay up later than usual. Mind you, we didn’t go anywhere for fireworks. We’re just talking about the small-time crackers and roman candles that some folks in the neighborhood set off. Still, progress is progress.

Anyway, this morning we ended up paying for the late night and the extra stimulation. As we were trying to get everyone ready for Mass, we were presented with two very strong tantrum-melt downs from two different kids, one stubbornly tired kid who could barely keep his eyes open, and another one exceedingly anxious about the her siblings’ potentially bad behavior in church.

We tried to roll with it. We really did. But after a while we realized that Mass just wasn’t going to work. It was too risky. So we played hooky. Sort of. Rather than go to our local church, which is only a half-mile away, we loaded everyone in the van and drove twenty miles to Mount St. Mary’s University–my alma mater of a Catholic college.

A Mini Pilgrimage.

The van is a safe zone. Each of them can enter their own world, whether by staring out the windows or by putting on their head phones and listening to music or by taking a quick nap. It’s one way to help them press the reset button, and that’s pretty much what happened. By the time we arrived, they were doing better. Not great, but better.

We spent about an hour there, walking the nearly empty campus and visiting the Grotto, which is a replica of the shrine to the Virgin Mary at Lourdes, France. We ended with a visit to the grotto chapel, where I had the kids sit as quietly as possible for as long as possible (5 minutes) and told them to try to pray. Then we read the Gospel reading they would have heard if they had gone to Mass, I said a few words about it, and we left. Nothing big. Nothing dramatic. And no other people around.

The kids did pretty well overall. We did have to deal with some sensory issues and low-level anxiety. And our toe-walker started to complain about pain in his legs from all the uphill walking. But I was glad that they got the message that Sunday is more than just another day. It’s still the Sabbath. It’s still the day that we honor God as a family. They saw that the alternative to missing Mass isn’t a free pass to video games.

A New Rule Book.

I don’t like skipping Mass. I really enjoy the closeness to God that I feel there. And for the most part, I can see how it helps the kids. But as far as I could see, there really wasn’t an alternative.

This is one thing that I’ve learned again and again as an autism parent: you have to learn to live by a different set of rules. It seems that everything we do—from church services to school, to recreation to family gatherings—we do differently. And there are times that we have to throw out even our modified rule book. But that’s okay. Because the only rule that really matters is this: Love and accept your kids where they’re at, and they’ll be more likely to follow where you want to lead them.

Crafting a New Narrative

The Doctor–Stories in the End

We had a dear friend over for dinner a couple of nights ago. I’ve known this woman for nearly thirty-five years, and we have worked together for thirty of those years, both as teachers and in our publishing company. She’s a delightful British woman with a heart of gold. She’s involved with prison ministry, she feeds homeless AIDS victims, and she writes children’s books. She’s also very easy with the kids. Nothing fazes her. And to top it off, she even looks like Julie Andrews!

So why was I getting increasingly eager for the evening to end? And why was I so exhausted after she left?

  • Because I’m unused to people visiting our home. We tend not to have people over because it can feel like so much work.
  • Because Katie and I have let ourselves get so wrapped up in this autism thingy that we can lose track of how to relate to people outside of the “tribe.”
  • Because I caught myself wanting to talk about the kids and their challenges, even when it wasn’t necessary or germane to the conversation, and it took energy to stay on topic.
  • Because, much as Katie and I love this person, we inhabit different worlds, and I don’t know how to “be” in her world any more.

Moving Beyond “Past Performance.”

These are all viable reasons. But the more I thought about it, the more I saw that something else was going on. I saw how I’m always on edge around other people—especially when I’m with two or more of my kids. I’m always worrying about which kid is going to act up next and which unique  aspect of our lives I will have to explain this time. Sensory issues? Social missteps? The “oncoming storm” of a tantrum or melt down? World-class perseveration? So I avoid these situations. I don’t look for opportunities to get together with other people or to get the kids out and about as much as I should. And that’s not good.

The thing is, even though I fear the worst, it’s not a foregone conclusion that something bad will happen. It’s true that when things do go south, they head there with a quickness that can make the head spin. But that’s not always the case.

Thinking about this, I recognized some other assumptions or expectations I have—and not just about visitors. “We can’t all go out to dinner; it’ll get too messy.” “I know that Mass is going to be a disaster this Sunday because so-and-so had a rough week at school.” “Another IEP meeting? What’s going to go wrong this time?”

See what I’m doing? In each of those situations, I’m accepting a negative narrative for our life, and I’m letting that narrative drive my decision. Of course, some of my concerns are justified. Things can get pretty challenging for us. People can (and often do) misunderstand us. School teachers and administrators still have a way of minimizing our kids’ challenges.

So yeah, we’ve got some history to draw from. But just as those investment firm commercials tell you, past performance is not necessarily an indication of future results. And the worst thing I can do is expect bad results. Sure, there are some things I know will cause immediate problems. But a lot of other events and situations inhabit that gray area where the outcome is far from predetermined. The problem is, I’ve been painting that gray area black recently, with the result that our kids aren’t getting the opportunities to develop their social skills and coping mechanisms—not to mention the fun they could be missing out on.

Make It a Good One.

So here’s to branching out. Here’s to taking steps—baby steps at first—toward exposing our kids, and ourselves, to new experiences. It’ll probably be a bumpy ride, but they’re usually the best ones. As The Doctor once told Amy Pond, “We’re all stories in the end. Just make it a good one, eh?” So here’s to changing the narrative so we can make it the best story in the world!

It’s All About Us

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I’m so proud of my oldest daughter. All by herself, without telling us, she produced this video for a project in her Aspergers-only school. She doesn’t often tell us what she’s thinking—not uncommon for any 13-year-old girl and even more prevalent with girls on the spectrum—so I was blown away when I saw this.