anxiety,  autism,  home strategies,  mental health

Making life hell on purpose

July 4, 2016 Sarah iphone 059
At the Exploration Place in Wichita. I thought the “Medieval Time Out” accurately represents what we feel like is happening when we take “the plunge.”

It takes 11 hours or so to drive from Wichita, Kansas to Fargo, North Dakota. I feel pretty lucky. My kids are great travelers—long car trips are never a problem for us. In fact, J really loves them. He memorizes every exit sign for the entire stretch of 1-29 until we hit Iowa/Nebraska. Then he knows every exit number from Topeka to Wichita. It’s really incredible—I don’t know how he does it. I guess it’s sort of his autism party trick.

We had just passed Council Bluffs, Iowa and still had six hours to go so I decided it was time to take the plunge. J and I had a week and a half hiatus from the plunge. I needed to make life hell on purpose again.

I hate it, because it’s not just really,really stressful for J, but it’s really, really stressful for me. Unfortunately for both of us, it’s just something we both have to do, because if we don’t, it will make life progressively harder in the long run.

I’ve mentioned before that along with the autism, J struggles with severe anxiety issues. It looks very much like obsessive compulsive disorder, and I have a deep suspicion that J does have a touch of that in his comorbid conditions. For instance, J has a running catalogue of good numbers and bad numbers. 152, of course, is his “lucky number”—it was his track number, so J loves “152.” Most often however, I know more about J’s bad numbers than his good numbers. “142,” “127,” and “2531” are fate-worse-than-death numbers. There are times of the day: “11:27” and “2:47,” that can cause big problems if we’re anywhere near a clock. And then there are certain words like “fever” and “tiger” that will send him into a puddle of anxiety. Songs on the radio, like Taylor Swift’s “Blank Space” or Adele’s “Rolling in the Deep”—that one I do get, because it has the word “fever” in it multiple times—are anxiety attack triggers too. His compulsion for all of these obsessions? Change the number or spelling of these triggers of course, or to change the radio station NOW. But it’s not that easy—in fact, when he changes numbers or spellings, it makes the anxiety worse. He wants to change more and more things in his environment around him because the first change didn’t give him as much control.

As you can see, it’s just easier to avoid all of these triggers altogether. But that makes things worse too because, as you can imagine, you’re going to bump into one of these things at least once a day.

So it’s either you have an epic meltdown every time, don’t leave the house at all, or learn how to face your fears.

That’s why we have to just take the plunge. So I popped W’s 1989 CD in and played “Blank Space.”

Right away, J started shrieking, “Turn it off! Turn it off now!” He started hyperventilating and grabbed my hand with a really, really sweaty hand. And then there were the large crocodile tears. This isn’t just “I don’t like this song,” it’s like J is going to die if you don’t turn off the song NOW.

I turned it off after 10 seconds.

“See, you handled it!” I said. He really didn’t handle it. But he didn’t die, and that’s what he really needed to know.

And then, 20 min later, I did it again. “J, if you can make it 30 seconds through the song, let’s pull out some M&Ms and all have a treat, okay?”

Still crying and meltdown, but we made it through 30 seconds.

We did this for the rest of the trip, adding more and more minutes to the “plunge” session. Sixty seconds (take deep breaths), a minute thirty (take deep breaths, you’ve got this) two minutes, two minutes and thirty, until we made it through the entire song.

After all, we had 6 hours to practice.

By the end of the trip, J could “tolerate” the song. He still would put his hands over his ears, but there was no screaming, no crying, no pulling on my arm to stop.

This is why we have to take the plunge. He needs to know that he can make it through. Letting the obsession take charge makes the anxiety worse. Getting through the obsession and finding out that the world doesn’t end makes the anxiety a little less.

July 4, 2016 Sarah iphone 018
It’s amazing to see this kid’s strength both in the intensity of his obsessions and the determination he can have to try to get through them.

We’ve been taking the plunge since school’s been out because I really, really think it’s imperative for him surviving school (behaviorally) next year. J just needs to realize that these obsessions are “just thoughts” and he doesn’t have to listen to the part in him that thinks they’re terrifying. Last year we ran into issues like “yellow fever” being mentioned in Geography, or trying to make it through 2:47 in the classroom at school.

Taking the plunge is just one piece of our “OCD” strategy. I’ve also created this routine where every morning before breakfast we read together J’s social story on obsessions. It’s sort of like a daily AA’s admission of being an addict. J is essentially addicted to finding things to obsess, worry about, and change. The social story is just a “check in” every morning to acknowledge that his brain tends to drift that way, and a reminder how if he lets his brain carry down that path too long, then life gets miserable for him. It’s also a reminder that he needs to label “that’s an obsession” right away so he can “take 5 deep breaths” and focus on what he’s supposed to be really doing right now. It’s taken me a while to figure out a good system to help him with his obsessions and anxiety. At first I tried exclusively the “plunge” system. Then I tried exclusively the “identifying the thought and labeling it as an obsessive thought” strategy. Then I tried exclusively a mindfulness strategy of being aware of your thoughts and then letting them go. All were good in their own way, but nothing seemed to work 100%. This combination of enduring your fears, labeling your fears as obsessive, and the mindfulness of letting thoughts go and re-centering on the breath seem to make sense to him. It’s been incredibly empowering for him.

Here’s a great little video about OCD and anxiety. More and more people are posting about their mental health struggles online and it’s been really helpful for me to see what kind of struggles J is going through too:

As of today, J can now handle “Blank Space.” In fact, the other day he announced that “I love all the Taylor Swift songs now.”

We’re still working on “Rolling in the Deep.”

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  • Crys

    Great post! I have anxiety. Sometimes I will actually say those things out loud…like yell out, “stop it” or “you are fine,” to try to stop a thought mid thought as if saying if outloud will help more than my internal mantra. Sometimes it does, sometimes it doesn’t. When we were heading to Kenya it got so bad that three times I convinced myself I was having a heartattack…the problem is the symptoms of a heart attack and a panic attack are fairly similar so one day when Jason wasn’t home to talk me out of it I went to ER. I was fine. This pregnancy has caused my anxiety to spike as well because of aylin prematurity and then the miscarriage. First I was sure I would lose the baby, then I was sure it would be born premature. I finally quit reading and whenever people weren’t around I’d have TV going or a musical,or radio, anything to distract me from this ever pressing thought that something was going to go wrong. Anxiety is hard because you recognize that your thoughts are crazy and yet they are more real than what you actually know to be true. Joshua is truly lucky to have you helping him with his!

    • sarahwbeck

      Thanks, Crys. Anxiety is so hard because even when he knows it’s anxiety, it’s hard for him to separate himself from that because that is truly his “reality” at that moment. It’s like asking him to take a step back from reality–which sounds very strange. I hope your pregnancy is going well! With past experiences I don’t blame you one bit for being anxious!!! Great coping strategies 🙂 we use music a lot too

  • Heather M Jolley

    Great post, as always. I didn’t get very far through the anxiety video. Because I don’t need more anxiety! I guess you could say that I’m like J in a lot of ways. I need to practice watching the video until I can get through it. Haha