It’s been about a month since Jesse started going to Rogers Hospital’s intensive outpatient therapy program for children and adolescents with OCD and anxiety. Also known as IOP OCD CA. Or maybe it’s OCD IOP AC. OCD IOP CA? IOP OCD AC? AC OCD IOP? I’m not sure at this point; you’d have to go find an older post where I get it right. Small details like these don’t stay with me nowadays, because I’m practically catatonic by the end of each day.
Nick drew me recently — he sees to the heart of things, with the deep emotional insights a six-year-old is still capable of having:
Very accurate, except I’ve put on a lot of weight the last few weeks, and I don’t think I smile so much lately. I’m glad he drew me slim.
* * * * * * *
We’re at Rogers 12 hours a week, but one thing has become abundantly clear to us: when a person has fallen into the clutches of a severe episode of anxiety or OCD, therapy never ends. You are literally always in the heart of therapy except when you’re asleep.
Everyone has skin in the game, from school staff to Jesse’s classmates to her family to random kids who step into her blast zone. Last Friday I overheard Nick explaining to a few kids on the playground that sometimes Jesse says inappropriate things. “Then we have to just ignore her and not get angry.” Jesse was in hearing range; she handled this accurate kid’s-eye-view really well. It is what it is.
Every waking moment requires vigilance of Jesse, a constant tracking of her thoughts, feelings and behaviors, as she struggles to understand when word blurts and obsessive thoughts come and go, and as she tries to identify the sensations in her body and mind that precede negative bursts — the premonitory feelings, to use the OCD/tic term of art.
Every waking moment requires parental vigilance as well, as we track and monitor our own behaviors, identify times when we could do a better job of cuing Jesse up so she can create successful moments, and fight with her to keep her going with therapeutic work.
It is utterly exhausting for Anthony and me as parents, and I can only imagine how much worse it is for Jesse.
* * * * * * *
Our basic therapeutic tools are a timer, a ban book, tracking sheets, something called a “STOP” sheet, coping cards, a competing response, and will power.
The STOP sheet is a really effective piece of the puzzle, despite the goofy kid with a bad haircut, a dorky crosswalk outfit, and… what are those, puffy socks in lieu of shoes?
This exercise forces the writer to separate feelings (and the body sensations that accompany them) from thoughts, and then to come up with positive alternative thoughts and forward-looking ideas. It’s surprisingly hard to separate feelings and thoughts. For instance, “I’m angry” and “you won’t let me…” get entwined in a child’s mind (and in many adults’ minds, I think). Separating them seems to be one of those tricky tricks of cognitive therapy that helps you work through whatever strong feelings are going on in your body, whether it’s depression, anxiety, full-on phobia, obsessive thoughts, or whatever.
The ban book is a little book where Jesse records how things are going with her banned behaviors (those pesky compulsions). She jots down hashmarks indicating whether she has “submitted” (S) to a compulsive urge or “resisted” (R) it, and whether she has engaged her “competing response” (CR) to fight against urges. The goal is to make that “S” number small and the “R” number big. Barring that, at least you want to see a big CR number. Accountability is enforced at Rogers, where the kids in the program collect at the beginning of each day to share their numbers. Zoinks.
The timer and tracking sheets are very technical tools. Jesse does a series of exercises every day that take a total of about two to three hours, depending on whether she’s having a good day. She does two-minute drills where she sits in a public place and mindfully holds her competing response in full — sits up straight with her ankles crossed, her hands clasped, and her lips clamped shut — while taking deep breaths and paying attention to how her body feels in its stillness. If she can’t keep it up for two minutes, she starts over. Sometimes it takes 15 or 20 minutes to get through one successful two-minute interval. (I dare you to try it – two minutes is a long time to sit in total stillness.)
She looks at coping cards which describe difficult situations, imagines herself in those situations, and then practices the skills she’ll use to cope and contain her behaviors.
She stares at taboo words and runs the timer while she fights the urge to blurt them; she stops the timer when the urge has passed.
She stares at photographs of kids with different skin hues and runs the timer while she fights the urge to say racist words and weird racial riffs, until the urge has passed.
For most of these exercises, she records the amount of time it takes for her to win, as well as her starting and ending anxiety levels. This creates a positive feedback loop and, hypothetically, some accountability and competitive desire to improve.
Sometimes Jesse is truly terrified when we begin these exercises, and sometimes she’s just royally pissed off. Who can blame her? She doesn’t want to see images and words that’ll bring on her worst behaviors and give her panic attacks. She doesn’t want to sit in public places, full of anxiety and obsessive thoughts and an emotional certainty that she’ll fail. If we could turn the amount of energy she’s using during these exercises into fuel, she’d be able to send a rocket to Mars.
It’s hard to be the parents sitting next to her as well. On the one hand, we have to demand that she comply with this exercise regimen, that she fight. That’s a parenting issue, and it hurts. It hurts to force your child into a state of high anxiety on purpose, in order to develop the skills and strength to fight that very anxiety. On the other hand, we’re supposed to present a patient, blank, neutral face in response to compulsive behaviors, however outlandish or offensive they may be. Because we can’t parent away the mental illness; there’s no amount of discipline or punishment directed at the disease that will fix it.
This balancing act is impossible. Anthony and I fall down all the time. We’ve begun to use the “STOP” sheet approach to challenge our own feelings and thoughts, and to find a way to separate the two competing needs. I’m not sure it’s helping. I think we’ll just keep screwing it up until Jesse gets better, and she’ll have to just get over it someday.
* * * * * * *
That’s just the surface. I could go on and on and bore you even more than I have already. There are so many ways this approach to therapy sucks. It sucks sucks sucks in the same way PT after a knee replacement sucks. It’s just pain and suffering and a black hole sucking up all our free time and emotional energy.
But here’s the thing: I think it might be working. Jesse has probably smiled more in the last two weeks than she did from September to April. She’s peaceful in the morning when she wakes up. She’s able to play with Nick again. We actually drove somewhere as a family last weekend and she didn’t explode in the car. We’re starting to have fun together as a family again.
Sometimes, she actually doesn’t seem to hate herself.
Every once in a while I remind her that when she does these exercises from Rogers, she is literally re-wiring her brain. Neuroplasticity is this phenomenally empowering concept that helps explain how a person can be physically tired after doing a bunch of mind work. Jesse’s brain is in overtime, using up all sorts of proteins and nutrients and oxygen and whatever to change itself. It’s pretty exciting. To me, anyway. Jesse usually just glares at me when I go on about it.
Is Jesse able to go to school successfully and exercise control there? Of course not, not yet anyway. But she’s working toward that goal, and we have new and more effective tools to bring with us into fifth grade so that she can get a stronger start.
Does she have friends? Of course not, not really. It’s been hard for her to connect with people past all the intrusive thoughts and fears that crowd her mind. No playdate or birthday party invites for my little girl. Her same-grade friends dried up and moved on long ago, with no explanation to her or me. So it goes with mental illness. But does it seem to be killing her? Not right now, at least on the surface of things. Her classmates have sustained her with kindness and tolerance in the classroom; we’ll take it and be thankful for what there is.
And that’s where we’re at after a month of intensive outpatient therapy. I think maybe life doesn’t suck as badly as it did. The entire curve has shifted. The bad days aren’t as bad as they used to be; and the good days are better than they were. I hold onto that these days, when Jesse’s compulsions burst out of her like an exploding septic tank. It’ll do.