Letting it all hang out 

I spoke with Jesse’s fourth grade class today about her OCD and anxiety disorder, her treatment plan, and the meaning of life.

Well… maybe not so much that last part.

Bear with me as I travel a long and winding road to telling you how it went, and let me put the punch line here in case you don’t make it to the end of this blather fest: SPEAK. If you are suffering, speak. Not just out of need and selfishness, but also as a gift to those who love you and share your world, and as an offering to others who suffer like you. Speak, so that they understand you better, so that you aren’t alone. Speak, to break the cycle of silence.

 * * * * * * *

I’ve become rigid in my belief that silence, sidled up alongside a false sense of the need for privacy, is a wellness-killer with respect to mental illness. But if I pay attention, all the messages I’m receiving tell me I’m totally wrong. Privacy and secrecy are the gold standard. Talking about this stuff remains taboo.

A couple months ago, Jesse agreed to be part of a story on childhood issues in an edition of Milwaukee Magazine dedicated to mental health issues. The writer asked me up front: do you want me to change your names?

Why? I asked.

He said something about privacy. I had my answer ready; I had already discussed it with Anthony and Jesse. We’re agreeing to be part of this story to fight stigma, to demonstrate courage for and with our suffering child. How can I tell Jesse I’m not ashamed of her, and how can I teach her not to be ashamed, if we hide her behind a fake name?

I thought it was a done deal until he called me back a few weeks later. He wanted to make sure I was okay with using Jesse’s real name. Yes, I answered. Yes, I have her permission and therefore yes, you have my permission. Remember what I said about stigma?

It was a pleasant, albeit redundant, conversation.

I thought it was a done deal again until the magazine’s editor called me a few days later. He wanted to make sure I was okay with using Jesse’s real name. I repeated myself. He said the lawyers insisted he make sure.

I started to feel a rise of anxiety. “Is there a reason you keep asking the same question? Am I giving you the wrong answer? Is CPS going to come after me for using Jesse’s real name?” No no, he assured me, just making sure.

But all the same, he asked me to send him an email confirming my decision, per the lawyers’ request.

 * * * * * * *

It seems to me that mental health institutions and professionals also encourage a sort of fetish for secrecy. When we were investigating enrolling Jesse in the Rogers outpatient program, we weren’t even allowed to visit the space to see how things operate. Privacy issues for current patients, they said.

On the first day we arrived at the facility — what do I call it? A clinic, a building, an outpatient facility, an institution?  Whatever I choose, it better be euphemistic. God forbid a mental health facility’s signs should actually say something about “mental health” so that I know I’m in the correct place. (I’d actually prefer something along the lines of, “CRAZY NATION, ENTER HERE.” Very clear, and laughing is good therapy, after all.)

Right, so on the first day, we had to sign a massive fine-print document regarding privacy. It read like a national secrets act agreement. I hope they won’t send me to mental-health-industry-Gitmo, and I hope they won’t kick Jesse out of the program, if I happen to write something here that’s considered a violation of one of the 800 non-disclosure provisions in that agreement.

If I weren’t a smug, grumpy, maladjusted human being who ignores social cues, I think all this input would be teaching me that I must seek privacy, that I must hide my family’s dirty little crazy secrets. Tell me about your cancer and your broken bones and your diabetes and your heart disease, but don’t lay your brain problems on me. That’s just… ew.

 * * * * * * *

Jesse has been on shortened days all year at school, but it’s even more truncated now that she’s in this intense OCD/anxiety outpatient program. She only goes to school from 8 to 11, plus she missed almost a full week of school for our intro week at Rogers. Not to mention that she’s been pretty wack-a-doodles all year long. A few weeks ago I started to think Jesse’s classmates might deserve to to be offered a little insight.

I suggested gently to Jesse one day that I could speak with her class about her diagnoses and what’s going on, kind of educate them a little. Jesse didn’t hesitate. “Yeah, that would be great,” she nodded. “They already know about all my inappropriate behaviors, because they see them all the time.”

Good point. Jesse appears to be following my lead in letting it all hang out. I love this girl.

 * * * * * * *

Despite the battle-ax I carry about openness, I was surprised to find that a concrete plan to talk with Jesse’s classmates about her disease unsettled me. I didn’t want to tell them what’s wrong with her. Still, we scheduled the visit for this morning and I crossed yet another little bridge in Jesse’s mental health journey.

I procrastinated vigorously and waited until last night to start preparing. I guess I thought I’d be able to google up something. Surely, some English speaker somewhere on Earth must have done a little presentation to kids about OCD and generalized anxiety, and posted it up on the web for a bum like me to plagiarize.

But no.

Maybe my bad attitude made my search mojo go wrong. In any case, I eventually had to come up with my own little outline and get on with business.

I walked into Jesse’s classroom this morning feeling anxious and fussy, even though I know this particular group of kids pretty well. I visit every couple weeks to do an “Art for Youth” presentation/project with them, and I’ve been on a few field trips. We’re pals, and they’re great about engaging with me and speaking up.

I won’t give you too many nitty gritties about what I blabbed about, but I guess I should record the big strokes.

I likened mental illnesses to other diseases of the body. We used diabetes as the analog. It’s a lifelong condition; kids have a harder time staying in control than more experienced adults; and over time you learn with diligence and hard work how to manage it and stay healthy.

We talked about what anxiety feels like. The kids did a great job of cataloging the ways it makes your body and brain feel really bad. And then I asked them to imagine feeling like that every day, all the time.

I showed the kids Jesse’s drawing of what her anxiety looks like:

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Yes, his name is Shock Lord. He’s a boy. Shock Lord’s arms are made of lightning, and his hair is a cloud filled with lightning. He is Shock Lord because he SHOCKS Jesse all the time. Jesse has explained to me (and I told the kids) that his eyes have been cursed to see things wrong. If he sees a small hill to climb, he thinks it’s a dangerous mountain. If he sees someone walking toward Jesse whom he doesn’t recognize, he thinks the person has knives and guns and wants to kill her. I explained how these fears can fill Jesse’s mind and blind her to what’s going on around her, so that she might appear to ignore a smile and a friendly hello from a friend.

I started seeing light bulbs go on.

We talked about what it means to suffer from Jesse’s style of obsessive thinking — to believe that the intrusive negative thoughts that percolate into your mind, unbidden, are significant and prove that you’re a terrible person. I likened the obsessive process to being trapped in a small cage with a giant TV on one wall, blaring at maximum volume on a station that only shows you things that scare you the most. You don’t have a remote control and you can’t close your eyes.

More light bulbs.

We talked about what compulsions are like — the feeling Jesse experiences, as if heavy rocks are pressing on her heart, and it doesn’t stop unless she lets out the blurted words or engages in the inappropriate behaviors. I showed them her drawing of the compulsive piece of her personality.

It is named, inexplicably, Ricket.

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Ricket is a dog-like creature and sister to Shock Lord. She was misled by a Sith-like character long ago (coincidentally, on Jesse’s birthday) into believing that the things she makes Jesse do are good for people, or maybe will protect Jesse. The claw over her head grabs taboo words and behaviors from around her. Ricket’s brain cavity grew into that large wiggly square shape to absorb the claw. Ricket’s pincer tail holds the blurted words to throw them out into the world.

Huh.

The kids soaked it in. Totally fascinated. Light bulbs left and right.

We talked about what Jesse’s inappropriate behaviors and offensive word blurts “mean.” I said they don’t have a moral meaning — she’s not trying to hurt you or offend you. In fact, she’s ashamed of the behavior; she hates herself for it. So what her behaviors mean is simply this: she is suffering from a mental illness that grownups still haven’t figured out how to treat effectively.

We talked about treatment. Medication to help with the anxiety, along with relaxation and cognitive interventions. I explained how exposure therapy works for the OCD — making her hear and see things that make her anxious, and then making her control her behaviors. I showed them what her competing response looks like. They were shocked, a little freaked out that we would do this to her. I explained habituation. They remained skeptical and expressed an almost protective instinct toward Jesse.

We talked about what the kids could do to help Jesse. This was easy, because they already do it. Most of these kids model great behavior. They’re kind and patient. They encourage Jesse to keep trying. They ignore her when she acts up. They never forget that she’s an ordinary kid under there, just like them.

And in the course of this boring tittle-tattle, these extraordinary human beings (nurtured and led by an extraordinary teacher) became bathed in shining haloes as their comments and questions came at me.

* * * * * * *

Many of their questions reflected a deep compassion, bordering on fear, for Jesse. Will she always have to feel like this? Can her OCD ever go away? Can she get rid of it? One little girl wept.

Some kids seemed to just want her to be in school more. One little fellow repeated back to me her schedule at Rogers, which goes Monday through Thursday. “What does she do on Friday?” he wanted to know. “I hope she’ll be at school,” I answered.

Several kids wisely focused on her anxiety levels. A conversation developed naturally about when she’s least anxious — when she’s drawing, everyone agreed, or playing basketball. They wanted to know what helps her. I was blown away by the practical implications of this — they were searching for ways to guide her.

Stories were shared about Jesse being bullied on the playground. It took me aback, because Jesse doesn’t tell about that stuff. Some kids from another class were kicking and pushing her away one day. Some kids said no to her. A group of boys teased her and asked her to chase them, then made fun of her. Jesse’s own classmates regaled me with stories about how they stood up for her and invited her to play with them. They told me that their teacher taught them their class is a family, so they stick together and they stick up for each other. I made my hands into a heart shape and mimed it beating on the left side of my chest. I couldn’t speak words or I would have cried.

Even now I have no words. You had to be sitting among these little people. The humanity, the compassion, the practical comprehension that overtook them when they were given the chance to understand why Jesse is the way she is right now — it was something glorious and profound.

At the end of our chat, Jesse joined us. She walked in shyly and sat on my lap, and she took questions from the class.

Which in itself is an extraordinary feat. Courage! I would have fallen over in a swoon if she wasn’t squashing my legs with her bony bottom.

The kids peppered her with questions, wise and silly, gentle and diplomatic. Do you like Ricket? Who do you like better, Ricket or Shock Lord? What’s your anxiety level right now? What things do you like to do that help your anxiety be lower?

Interspersed with the questions were the helping hands. Jesse, don’t let Shock Lord tell you bad things, said one sweet boy who spoke with a quiet sense of urgency. Don’t listen to him. A little girl spoke up. I’ll always play with you at recess, Jesse. If anyone says no to you or teases you, you can always find me. A boy chimed in. You can play basketball with me any time, Jesse. I’ll always say yes. The kids started riffing about Jesse’s drawing. They planned a drawing contest between her and another kid.

Finally, the teacher said we could take one last question. Jesse called on a friend whose hand was raised high. “Um, can I give you a hug now, Jesse?”

The class got up and it looked like Jesse would be swarmed. The teacher interceded and lined them up before they crushed her, and Jesse stood at the head of the line. One by one, hug after hug, these beautiful little people passed their love and acceptance to Jesse. It was so much that even Jesse — bastion of self-loathing, fortress of misery and cynicism — couldn’t find a way to cry foul on it.

It took my breath away.

 

 

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Grumpy about field day (we survived second grade)

Last Tuesday, the second-to-last day at Jesse’s elementary school, I spent three and a half hours chaperoning 10 second-graders (including my Jesse) through field day events. I participated in almost all activities, because that was more fun and because I wouldn’t have time later to get my own exercise in. It was physical and non-stop, 10 to 15 minutes at each of dozens of stations:  a variety of running relays, sack racing, move-water-from-here-to-there sponge and bucket relays, hula hopping (not a typo), jump rope, various throwing events (softballs, beanbags, wet rubber chickens), tug-of-war, tire-rolling, and so on.  My favorite (which we made up at a water station) was shag infinite nerf footballs for Carla and then try to tackle Carla.

Being chased by 10 second-graders was an interesting experience. Frankly, it felt a little ominous as I started off. A couple of them are almost as tall as me, and mostly they look so lithe and healthy, whereas I’m a frumpy 47-year-old mom. Granted, under the blub I’m chiseled, but still I expected them to be faster and more coordinated than me after the first 15 seconds. They weren’t. Also they moved in a pack instead of dividing and fanning out, so I felt like a comet with 10 trailers. I evaded them for long enough that I finally slowed down so they could catch me and pile on.

Jesse really struggled emotionally throughout the afternoon. When we first headed out, the kids were stoked and insane. Jesse immediately turned to me and snapped, almost desperate, “You know I can’t handle this, mom! It’s too crazy for me! It makes me feel crazy!” But she wanted to hang in there, so I did too.  I spent the rest of the event observing her intermittent melt-downs (5 or 6 in all) and pondering how she’ll ever make it in this life without breaking completely, but I also saw hints of why she will make it. Her screaming was always about herself, not others, so she didn’t alienate anyone who mattered. The head she beat with fists was her own. She’s not mean to anyone, really, except herself. Her classmates patiently kept coming to her aid, emotionally and physically. They’ve seen her pull this shit all school year, and still they didn’t judge her for her crazies or give up on her. They circled the wagons on her when I sent her away to take breaks and calm down – indeed, they got pissed off at me. One peaceful little girl took on the mantle of calming and soothing Jesse, filling her hurting soul with hugs, hand-holds, and quiet chatter whenever Jesse allowed it. It was amazing and sweet to see. I felt like I was given a significant object lesson in how to improve my behavior towards Jesse when she’s falling apart.

The other lesson I learned is that second-graders are generally still really temperamental and, well, sociopathic. Jesse’s pretty normal among this crew.

By the end of the day, half my peeps had shed tears. There were tears because I lost, I fell, I was awful, someone made fun of me, I got a scrape, she was mean to me, I’m too wet, I’m cold, this is too hard, my popsicle is the wrong color, I have to pee so bad. I gave out as many hugs and ministrations as I could, and I gave my sweater away.

Girl A was cliquey. She always wanted the same person on her team and she’d make a “we’re so cool we’re together!” exclusive mini-scene about it. Yeesh. I can’t stand that. I started splitting them up at stations requiring teams.

Most of the kids tried to get away with cheating at one point or another — not my Jesse, of course, who’s extremely rigid about that stuff. Boy B — a drama queen who cried a lot, despite classmates’ exhortations not to do it — kept complaining to me about the teams not being fair, not having a chance to go first, other classmates not letting him be on their teams, and so on. Whatever he could think of. He’d walk away from my indifference and comment dramatically over his shoulder, “I just want things to be fair. That’s all. I’m just really wanting it to be FAIR.” He was the biggest cheater of all. I started outing him whenever I saw him cheating (i.e., at every station) and making him go back for not-cheating do-overs. Jerk.

Girl C was being given the silent treatment by a couple girls from the class following ours as we moved through stations. She got quiet and sad for about half an hour, held my hand and stuck close, and then felt better and moved on. Stupid mean girls.

Boys D and E displayed significant attentional issues and were really, really hyperactive. Managing them was like chasing small unleashed dogs around. It was exhausting. They kept bumping into and tackling each other on purpose, they couldn’t keep their hands off anything, they couldn’t stay still to hear instructions, they seemed unaware of their surroundings. But they also seemed a little traumatized by nine months of behavior modification charts, and I didn’t have the heart to come down too hard on them. It would have taken away a lot of the fun. Also they were really good-natured and I enjoyed my time with them. They had so much fun energy, and I didn’t mind that they acted like hooligans. This was an eye-opener.

Girl F got so worn out she was in tears over each new station. I made her do the activities anyway, but I went with her. I ran (shuffled, really) next to her for the 50 yard dashes and tried to buoy her flagging spirits with pep talks, but she really had trouble bucking up. She didn’t scream and rant like Jesse, but she was feeling just as down about herself.

Boy G had so much extra energy that every time we finished an activity I had him run circles around our group for about 20 seconds (I’d yell, “G, run your laps!”). He’d run and run with a crazy look in his eyes and then catch his breath, ready to fall into step again.

And then there was Girl H, who always puzzles me. She took my mind in an unexpected direction. She’s always cheerful and articulate, with a ready smile; well-mannered, confident, strong, and apparently very bright. She seems like such a great kid who should have a lot of friends. But it was clear she hadn’t really connected with anyone in our crew. She went about her business from station to station, a smile planted on her face, the most athletic kid of the lot — but she never interacted informally with her classmates, and never let loose. I know from the volunteer admin work I do for second grade that she’s struggling academically, well behind in both math and reading test results. I know from my Jesse that she frequently cried at school about her academic difficulties.

H caused no trouble at all to me as the chaperone, but by the end of the day she was the one I walked away worrying about. I hope all the masks don’t stop that sweet little girl from succeeding, hiding her woes until it’s too late to address them. I hope she makes friends next year.

Despite the struggles of parenting Jesse, I’m thankful that she’s raw and naked, showing me everything that hurts so that we can work through it together. Otherwise, who knows?

I’m grumpy again, aka can you take my child to school for me?

If you have issues with cursing just walk away now because I have to unleash some feelings and I don’t think I’ll edit.

Today, as we geared up for the first day back to school after winter break, I remembered that I fucking hate taking Jesse to school. I hate it in an irrational, tantrumy, 5- year-old-facing-down-broccoli way. I’m so fucking tired of it. Counting preschool and Jesse’s traumatic, PTSD-inducing 7-month stint in the most evil Montessori school ever, I’ve been taking Jesse to school for 5 and a half years now. I want a new job.

First, I have to make her lunch because of her egg allergy. It’s a ball and chain in my life. Jesse doesn’t eat packaged or normal so it’s either some crazy home made taco array with fresh tortillas, or fresh bread. Fresh as in I have to make it and bake it, otherwise she won’t bother to eat, and then her blood sugar and her mood go all haywire. Bad. When well-meaning (or maybe not) people suggest I send something easier in her lunch and she can take it or leave it, I say things like “yeeeah I don’t think that’ll work…” and I try to sound like a hippy. But inside I’m thinking mature, constructive things like, “why don’t you shut the fuck up, you patronizing asshole, or I will beat the shit out of you, and don’t think for a minute that you can take me because under this blub I am CHISELED.”

Next, I have to get Jesse fed and dressed in the morning, via some random combination of threats and promises. I used to have action plans and sticker charts, but they made no difference so I just live in the moment now. It’s all pulling teeth, and most of the time it involves a great deal of whining and dissent. Jesse often joins me in the noise-making. Getting out to the car involves more threats, more promises, more grim waiting. On the worst days, Jesse screams during most of the 5-minute drive to school.  If she knew how to curse, she would curse me to hell all the way. Picture Charlton Heston on a beach.

The battle continues when we get to school. Usually I end up standing next to her open car door in the parking lot, bent over with my hands on my knees, insanely muttering “God I hate this I hate this, this is the worst part of my day” while she sits glumly, refusing to get out of the car.  By now, the promises have been used up and it’s all threats. Eventually she dawdles her way to the school doors. When she starts with the whining noises, I think things like, “oh my dear lord, you little shit, get your ass through that door or I will drag you by the ankle to your classroom and good riddance.”

Then comes the worst part of all, when I sit on the bench outside the entrance and help Jesse put on her backpack. As other children straggle past, she turns to me with those enormous, puddly green eyes, sad and scared, leans in on me and murmurs intensely, earnestly, “Mommy I don’t want to go to school, I just want to stay with you.”

I can’t even say it makes me feel guilty; it’s worse than that. I feel broken and useless. After 5 and a half years, how come I haven’t figured this out yet? Why is it so hard? But Jesse and I have to keep moving before the emotional shale slips out from under our feet and flattens us. We hold each other, touch foreheads and lock eyes, ignore sweet-and-easy Nick for a moment. I whisper sweet nothings to her. You’re an awesome kid, have a great day, go with the flow, let yourself be ish, see you at the end of the day, I love you. She nods and takes a breath for courage, puts on her backpack and grabs her lunch. We fake smiles for each other. We tuck our broken hearts away and step forward into a new day. More often than not, she takes one last look at me as she walks through the door, but then she trudges on without a glance back, a diminutive 46-pound soldier walking to her schoolroom doom.

Do over tomorrow.

That's my girl

That’s my girl