Three years ago we brought autism to a rock concert and the Women’s FIFA World Cup. Since then we’ve taken autism to California, Ontario, Manitoba, Kansas, Florida, Colorado, and Utah. We’ve taken autism to the Canadian Rockies and we’ve taken autism to Hawaii. I go back to these posts and look at all of the little hiccups we encountered along the way. Sensory overload at the Imagine Dragons concert, “tainted” hotel room numbers, late nights, disrupted schedules, toenail injuries and urgent care visits. Anxiety over tram rides. Time zone jumping and red-eye flights. None of these trips happened without some sort of minor autism crisis–but we managed them all. I’d consider all of these experiences wins. They weren’t perfect, but they were good. Each time we travel we learn a little more about what J and what tests his autism and anxiety and how we can make that better for the next time. We’ve travelled quite a bit as an autism family that two years ago I wrote a little article for Utah Valley Pediatrics outlining tips for travelling with an autistic child.
Which is why this is a post that, at this point in our lives, I didn’t think I’d have to write.
Steve and I thought it would be fun to take the family to Minneapolis this weekend to experience the Minnesota State Fair. We’ve lived in Fargo for ten years now and have never made the trip down, and everyone we know says it’s one of the best parts of summer living in the upper Midwest. So Friday night, Steve and I decided that we were finally going to make that trip happen.
Except that it didn’t happen. Because of autism. Because J’s two “tainted” numbers right now are 55 and 67 and I-94 East just happens to have exits 55 and 67 en route to Minneapolis. I don’t know why those two numbers–those two exists are a thing. But they are. They’re a really big thing.
J couldn’t fall asleep that night. He was dead-set on not going to Minneapolis. I figured we’d wake up Saturday morning and just do it. Because that’s what you have to do with J’s autism-brand anxiety. It’s like OCD-brand anxiety. You stick that germophobe’s hands into the garbage can and hold them there until they realize nothing bad is going to happen to them (I think the clinical term is “desensitization”). Every time you expose that anxiety to the “tainted” trigger and push through with relaxation/coping strategies, the “taint” wears off a little. That’s how you learn how to function a little better. If you can’t face those phobias, you’ll never leave your house again.
And we figured we could do that with J this weekend. In fact we’ve done it before–last year, on J’s cross country trip to Willmar. We got him into the car (by telling him we were going a different route) and passed those tainted exits while coaching J through his coping strategies until those numbers passed. And he did it. He pushed through those triggers, ran an awesome race in Willmar and came home a happy kid. We thought we’d just do the same thing again.
This time, however, we told him we would be taking 1-94 to Minneapolis and that he could just push through it and it would be just fine. This time it didn’t work. He threw an epic, EPIC, meltdown. At one “down” part in the meltdown, we were able to get him into the car, but he wouldn’t stop yelling and flailing and flew out of the car and down the sidewalk. 100% fight or flight mode and we realized it was impossible to have J, in this panicked state, in the car for 3.5 hours. We unpacked the car. J settled down almost instantaneously.
He had won. But even worse–the anxiety won.
We haven’t lost an anxiety battle in years. YEARS. Even back in February when J had a panic attack about going to school because he thought a fire drill happen and it took us a good 45 minutes to get him through the door, we got him through the door. So this weekend’s defeat was absolutely devastating. Because anxiety won. And anxiety will tell J then next time he needs to push through exits “55” and “67” he just needs to fight back and he can avoid those big scary monster numbers.
I hate anxiety. Anxiety ruins everything.
None of us got to go the cities this weekend. Anxiety didn’t just disrupt J’s life, it disrupted all of ours–W, Steve’s, and mine. Because of J’s anxiety none of us could leave Fargo. And right now I’m going to give a shout out to my daughter W. She is one of the most patient and stellar kids I know. She was the one who hugged me when I was a mess over the whole situation. She was the one who was okay with going to Barnes and Noble and Target instead of the state fair for our “fun long weekend.” I know she was disappointed that we didn’t get to Minneapolis, but she was still legitimately happy to do the at home Fargo things too. This girl is unlike any kid I’ve ever seen. And really, she shouldn’t have to be.
There have been a million things to mull over in the last 36 hours. How far do you push someone who has severe anxiety? How do you discipline someone who essentially has a meltdown to get their way to ruin everything for everyone else? Yes, I get anxiety. But having an epic meltdown over anything is never, EVER, acceptable. It’s downright selfish. Anxiety and autism are no excuses for selfishness. I get flight or fight–we’ve had almost 16 years of experience with it. Fight or flight is almost always the wrong response to a stressful situation.
As a parent I feel demoralized. I pushed knowing this trip would be a tough one, but we push “tough ones” all the time. If we didn’t J wouldn’t be functioning at the level he’s at. But this is a big battle to lose. It’s going to make that XC trip to Willmar at the end of the month that much harder to go to. I’m not even sure next time we’re going to get him to the car.
We’ve crossed the border dozens of times over the last ten years. We’ve waited through long customs lines, taken off shoes, coats, shuffled passports and backpacks. J’s worked through anxiety stomach aches and physical discomfort every single time. We’ve been to Disneyland and waited through long amusement park lines. We’ve dealt with all sorts of uncomfortable unexpected things, but a three and a half hour drive to Minneapolis. MINNEAPOLIS?
“55” and “67”, you better watch out–it’s GAME ON.
This family has too many fun and important things to do for you to get in the way.