A relative perspective on cognitive behavior therapy

I took Jesse in for her annual today.  At eleven, she was due for a couple immunizations — tetanus booster and such — plus it’s the beginning of flu season. Also at eleven some docs now check cholesterol levels. Jesse’s not at high risk, given our healthier lifestyle and diet, but she takes some intense levels of anti-anxiety meds and I do worry what they’re doing to her. I figure more information is always better, so I said sure, it’s just a finger prick.

Jesse is always stoic about shots. I nattered at her about it as we waited for the nurse to arrive with the needles. How come you can wait here without even being worried, and watch the nurse hit you with needles, and watch her stick your finger and squeeze out blood, and not even twitch? You pretend it doesn’t hurt and then you smile at her and act all nice to her? But if your shirt gets 2 droplets of lemonade on it, you’re all ‘OH MY GOD MY SHIRT IS STICKY AND DIRTY I HAVE TO GO CHANGE NOOOOOOOW!’ Have you ever wondered in that moment if it’s Ricket [her OCD alter ego] speaking and not a real issue?”

Jesse gave me the stink-eye from the examining table, but she said nothing.

And indeed, she sat peacefully for the finger prick and shots. Two shots went in her left arm. She likes to watch. The third went in her right, which was awkward to reach in this particular exam room without a lot of adjustment; so I just sat her on my lap and we pretended she was a wee one again.

I saw a quick wince of pain pass across her face before she could hide it, when the third ridiculously long needle went in.  She’s good at tolerating pain of this sort, and I asked her why as she sat on my lap. “Because I hurt myself all the time, Mom, this is not a big deal.”

Huh.

When it was all done, Jesse was fine, of course. I asked her a final facetious question. “If you compare a blood prick plus three shots to going to exposure therapy for your OCD, which is more painful?”

Jesse  didn’t need even a half second to answer.  She snorted and replied, “the exposure therapy.” There was an implicit “DUH” in her tone.

my father-in-law is the fastest old man in New Jersey, and also I turned 50 today

Yeah, you heard me right: my father-in-law is the Usain Bolt of 80- to 84-year-olds in New Jersey.

Yes, I’m being cheeky by referring to him as an old man, because he clearly has maintained a youthful vigor. At 80, he has a bionic hip and a bum shoulder, but he’s still out there training and competing, and he won the 100 dash in his age division in the New Jersey senior Olympics. I’m confident he can run the 100 faster than me. He has officially qualified for the national Senior Games (I didn’t even know that was a thing). Pretty cool. Also he takes dance classes, for fun.  Also he went boogie-boarding with us in the ocean last summer. Also he’s an active and successful realtor. Also he’s married to an equally fabulous-at-80 woman who exercises regularly, keeps her mind fit, and has it all going on.

I can’t decide today if all of this makes me feel inspired or inadequate.

I’m in the midst of a cold-turned-sinus-infection that I can’t beat, and Anthony is in the midst of a horrifying double attack of gout in one foot. He’s been walking like a slo-mo zombie, and his face has been ashen with pain, for almost a week. We woke up this morning and it was situation normal. I rushed down to the kitchen to get breakfast and school lunches going.  Jesse came down quick and sang happy birthday to me, and then I heard Nick bawling ad nauseum upstairs. He was upset that he didn’t get to sing first. After managing that emotional need, I came downstairs and got busy again with my morning tasks. Then Jesse’s tics took over and I got to listen to her say all sorts of gross things about sex, so I nattered at her and tried to get her a little more on track before sending her to school.  The whole time, while everyone’s thinking it’s my birthday, I’m trying to fend off thinking about the fact that it’s also my father’s memorial day.

It was all very frustrating, but also normal.  My life is the same at 50 as it was yesterday, when I was 49. Life is magical that way.

* * * * *

When I was in my teens, I recall becoming aware of the cult of female youthfulness in America, this desperate need our culture teaches women to feel — keep the breasts high, the tummy and legs taut, the hair not-gray, the skin not-wrinkled. But I would see photos of grizzled old women and think how beautiful they were, having lived a life that shone through their eyes and well-placed wrinkles.  I would see arthritis-bent hands and wonder at the labors and arts that made them that way.  I didn’t pay any mind to the extra weight many people carry into the beginnings of old age.  I wanted to look like that when I was old and weary. I wanted to look old and used and well-lived, not surgically enhanced.  I thought my old grandma was one of the most beautiful people in the world, with her gray hair and soft wrinkles and loose skin.

But now I’m actually aging up good and plenty, and I’m starting to think maybe it’s not all that great. My aging skin gets really dry here in Wisconsin, and itchy. I guess I could do without the itchy chapping. My arthritic fingers — very well-used by years of piano and a variety of manual labors — hurt sometimes. I’m less flexible and pull muscles too easily.  And I admit, with 30 extra pounds on my body and dark circles under my eyes from the  stress and exhaustion of parenting and a practically non-existent exercise regime, I don’t feel so awesomely beautiful most days.  I just feel tired.

I know there are things I can do to change this. Regular exercise is fundamental, but hard to fit in with kids around. I could use lotion more frequently. Maybe floss more. Eat even more vegetables. Drink chamomile. Stuff like that, right?

Not on my list? Cosmetic surgery. Leaving aside my general opposition to it, how could I live with myself if I died having a tummy tuck and left my children motherless?  I’d rather do crunches. Nor do I want to use anti-aging creams unless they have some positive health benefit, like reducing pain or helping my skin chap less. And I’m too lazy to dye my hair (it would never look as good as my original color anyway) or wear make-up. I can do without all those chemicals to boot.

Maybe if I started every day doing a New Zealand Haka, facing off with myself in a large mirror, my tongue lolling and my eyes rolling, I would feel better about myself. At least the reflection would more accurately portray how I feel inside.

* * * * *

Or maybe I can just start taking a fresh look at myself, at 50.

Look at that hand.

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Those knuckles didn’t used to be so knobby, nor the fingertips quite so puffy; my pointer finger has started  to corkscrew to the left a bit with arthritis; my pinkie used to be straight, without turning in at the tip like that. You see how the middle two fingers are sort of close together? That happened in college, when over-use led to some sort  of tendon injury that radiated up the top of my forearm.  My fingers look older than 50 to me, but I guess that’s because they’re well-used. I’ve made a lot of beautiful music with them, cooked a lot of good food, built a lot of beautiful things, planted beautiful gardens.

The age spots tell me I haven’t hidden from the sun. My forearm shows those age spots even better.

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Could use some lotion. Earlier this summer I remarked to Anthony that my skin looked good this year. He answered, “That’s because  your tan makes the age spots less visible.”

I love my man.

And look at the age spots under my eye.

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Never mind the fuzzy photo, I can still make out the age and wrinkles and grays. And unplucked eyebrows.  Another function of laziness.  But that’s still my brown eye. A better picture would show you that it still flashes glints of gold, and maybe there’s a richer sadness in there than there used to be, the gift of 11 years of painful parenthood.

And here’s my love.

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30 years after we first met, our faces are rounder, our skin more splotchy, our teeth more yellow.  The hairlines have changed.  But the smiles are real and true. There’s a joy in being together that sings out from those faces, and a life of love speaks through the crow’s feet around those eyes. I wouldn’t cover that up with makeup or skin peels or airbrushing, not for a million bucks. These are two very beautiful people. And I happen to be one of them.

* * * * *

But maybe I could still do a little more to take care of myself and be healthier.  I’ll take inspiration after all from my father-in-law, who has fought back against aging, not with superficial steps like hair dyes or skin chemicals, but by working from the inside out  –staying mentally and physically busy, exercising, working, reading, thinking, traveling.  In other words, by living.  I won’t ever be the fastest old lady in Wisconsin, but maybe I can strive to be the healthiest, happiest, and most-well-adjusted old lady on the shores of Lake Michigan, some day, 30 years from now.

The pith of my children

Anthony: “So Jesse, you should pick one thing to make your life fun, like one thing that’s special that you want to do, and that’s what you can do this semester. Like art or painting, or something like that. What special thing do you want to do?”

Jesse, waving her hands excitedly  in the air, with a slightly maniacal expression on her face and an earnest twinkle in her eye: “Make a dragon out of DNA!”

Tae kwon do it is. 

 * * * * *

Anthony and Nick are bantering about a huge sneeze out of Nick, which left junk all over Anthony. 

Nick: “I am just getting even.”

Anthony: “For what??”

Nick: “Something you did a long time ago, maybe.”

Anthony threatens to sneeze on Nick then. 

Me: “Be careful, Nick. Remember that Daddy is an escalator.”

Nick: “Oh! Then he is like Donald Trump!” 

 * * * * *

My spawn. Awesome. 

Back to school kind of sucks for many special needs parents

Everyone sooo happy and relieved, and done whining about buying school supplies and what to wear for school pics!! Kids are back in school.

Meh. Back to school can be one of the hardest times of the year for parents with special needs kids. Let me illustrate this by telling you about my twosome.

Nick

Last week Nick and I sat together looking through baby photos. I told him aimless stories about his and Jesse’s infancies, about the ways they terrorized us, the tantrums and screaming fits and nasty diapers. Nick asked, “Did I have temper tantrums?”

“Sure,” I answered, and then it struck me:  I can’t remember the last time Nick had a tantrum. I recall some spectacular ones from his toddler years, but nothing after that. He’s just seven, and he hasn’t had a tantrum in years.

Nick is my neurotypical kid and then some. I’m learning not to say things like “well adjusted” or “normal” because I no longer know what that means. Better to say that he’s low-needs and exceptionally pulled together on any emotional scale that I can come up with, at least on the surface of things. He goes with the flow, naturally.

Preparing to go back to school with Nick basically amounts to doing nothing. A couple times during August he worried aloud about knowing how to count and add by fives. I told him, if you knew all that stuff you wouldn’t have to go to school; you’ll learn that in first grade. Lights dawned in his eyes, he realized I wasn’t going to make him practice, and he ran off to stick his fingers in our dog’s ears.  He was satisfied. My work was done.

* * * * *

Nick’s first grade teacher gave her students a little note to read the night before school.

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Awww, isn’t that sweet? Our teacher is a superstitious witch! Well, maybe a fairy. She made magic confetti!

This dime baggie was attached to the magic note:

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Let me just say from my very personal perspective: offering children a dime baggie of tiny confetti to sprinkle around their beds may not be the best move if you want to endear yourself to parents, especially those with cleanliness issues.

But the not-messed-up part of me gets it. So I gamely read the poem to Nick and handed him the confetti. He fingered the baggie gingerly, a slightly bemused look on his face. “So… I’m supposed to sprinkle these things under my pillow?”

“No,” I answered firmly, as I considered how many centuries it would take before I managed to round the confetti bits up. “But you could put the entire little baggie in your pillow, and your teacher says it will help you sleep better.”

Nick eyed the baggie suspiciously and thought for a moment, unimpressed. “Neeeh, I don’t think that will work.” He tossed it dismissively on the table and walked away, adding over his shoulder, “That will not help me.”

* * * * *

The first day of school, Nick woke up, went through his usual morning routine, and trotted downstairs for breakfast. He was relaxed and at ease.  A good 15 minutes into our morning, as I wandered about the kitchen making breakfast and school lunches, I made some passing comment and his eyes shot up. “WHAT? We have school today??”

He got over it. When I dropped Nick off at school, there were no tears shed, no demonstrations of anxiety. There rarely are with Nick. He didn’t demand excessive hugging and kissing. He plopped down at the back of the line where his teacher’s students were gathering in the gym, his body loose. I could tell he was a little nervous, but I walked away without a single backward glance. I don’t worry about Nick. Even if something goes wrong, I know he’ll handle it. He’ll make new friends or he won’t, and either way is fine because he’ll  get over it with a little help from his family.  He’ll go to speech therapy and be fine, because he’ll be glad people can understand him better. He’ll learn the academic stuff or he won’t, and either way is fine because if there’s a problem we’ll fix it together and he’ll get over it.

Nick came out of school completely happy on the first day of school.  As we sat down to dinner, he looked at me and nodded contentedly. “You know, mommy, my new teacher is actually pretty nice.”

Jesse

If both my kids were like Nick, I too would be singing praises about how awesome the first day of school is. My biggest worry would be where to find those odd items on school supply lists. But I also have Jesse, who is currently profoundly debilitated by her mental illnesses. Her tics, obsessions, and anxieties spiraled upward as the doom of school approached this year, reaching close to the peak levels we witnessed last summer before we put her on anti-anxiety meds.

So while Nick was gamboling about the house in late summer, playing make-believe with dragon figurines and forgetting to put on his shorts, Jesse was twitching tensely about the house spewing foul and offensive word-tics from her mouth, screeching about her fears, and terrorizing us with various tooth-gnashings, door slammings, violent bawlings, and extreme hand washings. I can’t fill those blessed foamy soap dispensers fast enough.

August was busy with managing Jesse’s mood swings, writing letters and outlines of issues and needs, preparing for meetings with school staff, returning to Rogers for additional intensive therapy, strategizing about tactics and resources needed to give Jesse a good shot at a healthy school year, figuring out medications (we started something new), making endless lists of possible accommodations and tools that will help Jesse possibly-maybe-hypothetically go to school full time this year, and engaging in a string of emails back and forth with school staff about how things are going to go down. Jesse also attended a couple summer camps, firmly establishing that her behaviors are going to require a tremendous amount of adult management at the start of things.

Just to give you a little feel for what we’re going for in therapy: one of Jesse’s main exposures is to stare at photos of her teacher and other school staff, and then not blurt weird nasty things about them.  It turns out everyone has a race, a gender, a size, and an age, and Jesse’s obsessive mind can settle on any insult associated with any of those traits and replay it a million times in her head, risking offensive blurts.

Anyway, a couple weeks ago, I had a pretty long meeting with most of the school staff Jesse will be working with. It wasn’t an IEP meeting (though she does in fact have one). It was more of a “what in the world are we gonna do?” kind of meeting.  We discussed Jesse’s status, her diagnosis and treatment, her needs, and all sorts of details. We made plans for as much as we could plan ahead for. I left the meeting feeling both optimistic and frightened.

And also I had to pick up those blessed school supplies, and I could not find a single yellow-covered spiral notebook, dammit, not in the whole of creation. Plus Jesse just told me yesterday that she doesn’t think I sent in the 6 pocket folders in 5 specific colors plus one extra in a color of your choice. Inconceivable.

* * * * *

That was the actual doing stuff. In the weeks before school started, many hours were also lost to purposeless extreme worrying, founded in years of experience.  Will the school actually come through? Will they actually do the things we agree to do? Will they have enough staff time? Will they remember everything? Will everyone who works with Jesse be informed this year, or will allied arts staff once again be kind of in the dark? Will substitutes actually bother to read the things teachers leave for them, so that they don’t mis-handle Jesse? Will anyone at our middle school be able to love and protect Jesse well enough, and will they build a massive cocoon around her like I do all summer long?

Or will Jesse wither and die a little emotional death each day, filled with self-loathing and an infinite sense of failure and suffering?  Will her classmates be tolerant and kind? Will they understand? Will there be mean girls who tease and exclude her? Will kids make fun of her on the playground again this year? Will they stare? Will she hurt any of her classmates with her behaviors? Will she be invited to any birthday parties, let alone make any friends? Will parents be mean about her? How badly will her self esteem be hit when all this goes down? Will she start hurting herself again?

How will I protect Jesse when she’s at school? How will I pick up the pieces when she comes home? How will I get past my own hurting to take care of hers?

* * * * *

Today, on the third day of school, I went into Jesse’s classroom to introduce her peers to what she’s going through. I spent hours beforehand updating and practicing my outline from last spring, when I spoke with her 4th grade classmates, to include a few new ideas that we’re working on.  I got Jesse’s permission to talk to her class, and I went over my outline with her.  She handled it with a stiff upper lip and agreed that it was a go.

In my mind, I call my presentation “What the F*$& is wrong with Jesse??” But that’s just between you and me.

I went into the classroom and saw a lot of new faces. I wrote on the board these things:

STIGMA

ANXIETY DISORDER

OBSESSIVE COMPULSIVE DISORDER

TOURETTE SYNDROME (TICS)

And we talked for a good half hour. I tried to impart to the kids the visceral sensations Jesse experiences because of these problems.  I asked them for compassion, understanding. I didn’t get a warm and fuzzy feeling, but the kids are older now, less apt to openly share. And they’re only three days into the school year and don’t know each other yet, any more than they know me.

I asked them to do Jesse’s competing response.  20-odd kids clasped their hands, clamped their lips shut, and crossed their legs.  We sat in silence for 20 seconds before several of them started twitching. I explained that Jesse’s basic drill involves two minutes, which I think is pretty impressive! But no one seemed especially agog about it.

I described intensive exposure therapy briefly — exposing Jesse to an anxiety-inducing trigger and then helping her learn to control and calm herself.  A good friend of hers chimed in, “So basically, you torture her every day at the hospital.”

Yes, I thought to myself, that’s accurate.  We go to Rogers and torture Jesse four days a week.  But out loud I said something like, “That’s one way to look at it, but I choose to think of it as vigorous exercise or physical therapy.”

And I think I mean it. I’m pretty sure anyway. Because intentions are everything, right?

I guess.

* * * * *

And I could go on and on. There’s no counting the nuts and bolts special needs parents deal with as we send our kids back to school. There’s no end to the worries as we watch our children step back into a hostile world after a summer in our protective bubble.

So let me send this shout out to myself and to all the other special needs parents gearing up for another punishing school year: We are relentless warriors, beasts, battering rams breaking down the paper walls and false doors that stand in the way of our children. We are the main reason our children, and the like-challenged children who follow them, have a chance at living in a world that enables them instead of disabling them.

We’ll drop balls, we’ll forget things, we’ll screw it all up. Then we’ll pick up the pieces, remember the forgotten things, and make it all right again. We’ll keep trying and we’ll keep going, because that’s all we can do for our kids. We don’t need to be thanked and applauded wildly, but we sure deserve to be.

And F*#% the school supplies.

Let’s stop talking about Donald Trump’s mental illness (in defense of mental illness)

I’ve seen a lot of “Trump is mentally ill” articles and memes this election cycle. At first I found them entertaining, but then pretty quickly they set me to thinking.

In defense of my mentally ill daughter Jesse, let me just say these few things.

Suffering from mental illness doesn’t disqualify a person from holding a job with tremendous responsibility, not even the presidency.

Lacking self-awareness, avoiding treatment, having no control over your illness so that you hurt other people? Probably does, but in the same way that any human being, mentally ill or not, is generally required to behave in a responsible way.

Suffering from mental illness doesn’t turn a person into an unmitigated asshole. It can make a person appear to be so, but it usually isn’t true. Thanks to her Tourettic OCD and anxiety, Jesse blurts “the N word”, blurts inappropriate sexualized chatter, and says inappropriate things all the time; she often has trouble connecting with people in ordinary conversation; she has terrible mood swings and tantrums; she lashes out at her family regularly.

But she’s also a profoundly empathic, loving, thoughtful person who believes in justice and equal opportunity and charity and diversity and hope and love and all the other moral imperatives her parents have taught her.

When her OCD and anxiety don’t own her, she’s charming, supportive, and very bright. She’s curious about the world, and she asks questions with insight. She’s a model big sister, providing for her brother and entertaining him. She’s thoughtful with compliments to people who are mean to her. She forgives friends and family for shunning her or lashing out at her for behaviors arising out of her illness.

And here’s a thing.  She takes responsibility for herself (partly because we make her, but mostly because she just does). She doesn’t blame everyone around her. She apologizes, every single day, for the shit she pulls.

She is excluded from activity after activity when her behaviors are disruptive or offensive. It’s what happens when you’re not in control, and so we’re teaching her that she has to work hard to gain control. (With her family right by her side.)

She doesn’t think she’s so awesome and amazing that she’s entitled to entrench herself in bad ideas. In fact, she hates herself. (We’re working on that.)

She goes to therapy every week (sometimes unwillingly, but we’re there to prod her along). For a couple months last spring she was in therapy three hours a day, four days a week.  She’ll do it again starting this fall as she tools up for school. She’s preparing, fighting, learning. Changing and growing, and becoming increasingly self aware. (So am I.)

That’s what severe mental illness looks like to me. It doesn’t look at all like Donald Trump.

A significant mental illness is usually something you’re just born with. When it comes to judging a person, what’s relevant isn’t the illness — it’s what you do with yourself, with whatever talents and impediments nature imposed on you.

Indicting Donald Trump because he has a mental illness is a cheap play to the deeply entrenched social stigma that still attaches to mental illness, just as surely as the Donald played the race card on President Obama with that birther business. The person who pulls the mental illness card on the Donald is saying this: “Look, you and I already know he’s a jerk. He’s egocentric and narcissistic, he’s a megalomaniac, he’s ignorant and thoughtless and yadda yadda and all that, but it gets EVEN WORSE. This is all because…. he’s MENTALLY ILL!”

OH MY GOD, YOU MEAN HE’S NOT JUST AN ASSHOLE?? He’s mentally ill!! That’s so much worse!!!

But let’s be clear. Lots and lots of people suffer from mental illness and go right on about the business of being decent, well-adjusted, thoughtful human beings.

In other words, if you have a problem with Donald Trump, Hillary Clinton, or anyone else in this world, please consider talking about the things they do, the things they say, the way they carry themselves. You might consider exerting pressure on whoever it is you have an issue with, the way we exert pressure on Jesse to change, improve, apologize, and take responsibility. Or, barring that, to just go away. Votes can make that happen.

But please don’t play the crazy card anymore.  Please don’t throw my daughter into the same basket as Donald Trump. He is a uniquely awful person because he chooses to be, not because he’s a victim of mental illness.

OCD MASK

Twice a week at Rogers Hospital, Jesse joins the other kids in the OCD program for “experiential therapy” (the inevitable ET). I didn’t know what those two words together mean. It felt jingoistic. So I googled it and learned that it means doing activities that encourage the patient to identify and come to grips more indirectly with “hidden or subconscious issues.” Still felt jingoistic. I’m sure it’s more extensively thought out than I’m describing it, but basically the kids sit around and do stuff together — art, meditation, story telling, I don’t know, basket weaving.

Jesse’s first couple weeks, her behavior during ET was so outrageous that they booted her from it the third week. Our behavioral specialist (you got it, our BS) told me about the plan, and I remarked that this wasn’t going to go over well. Sure enough, when he told Jesse, she folded over in two and wailed, “OH GREAT I’M A FAILURE ALREADY!”

Excellent, excellent. ET in action, helping Jesse come to grips with all new levels of as-yet-unidentified self-loathing, with the  assistance of her trusty BS.

But she went back and has struggled on, week after week, yawping and interrupting through bouts of ET. A few weeks ago, the kids made “OCD masks.” They were each given a white paper mache mask to draw and color on, with instructions. Counterintuitively, the inside of the mask depicts how the child believes others perceive her. The outside of the mask depicts how the child perceives herself.

Jesse brought her mask home recently. Here’s the inside of Jesse’s mask:

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Jesse told me this is intended to show that others see her as “kind of crazy.” She doesn’t mean that in a pejorative way. She means something more along the lines of “kooky,” as in she likes to get goofy and silly, she likes to go a little crazy when she’s having fun, she’s got a lot of pent up energy. So she chose bold primary colors and sharp lines, to show that energy and craziness.

Here’s the outside of Jesse’s mask:

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I succeeded in not crying when I saw it; I saved those tears for later. I probably didn’t do such a good job of hiding how startled I was. We didn’t talk about it much. She pointed out that there’s a dragon at the top, on the forehead. “I think about dragons. A lot.” She told me she had explained to the other kids that she’s “kind of goth,” so that’s why she chose dark colors. That’s about as far as she was willing to go with me.

Tonight she came home from Rogers and it had been a pretty tough evening. She kicked the back of Anthony’s seat in the car several times on the drive home, and she spit on him during exposures. I was angry and depressed by that, and I gave her the what-for, including saying unnecessarily and cruelly that maybe she’s not ready to go on vacation to see her grandparents, a highly valued trip to the ocean which is coming up asap. She didn’t rage at me, which surprised me a little. She was calm, almost blank, as she picked up her mask and pointed at the outside. “This is how I feel right now, Mommy.”

You would think I would have followed the lead and engaged in a conversation. But no. Instead I said, I don’t care how you feel right now. I care how you act, because that’s what we’re working on, that’s what matters.

Needless to say, not long afterwards I felt like a terrible, horrible, no good, very bad mom.

Technically, I’m right. Cognitive behavior therapy, CBT, is mostly about changing behavior. For little kids especially, the cognitive aspect of this work is secondary. We don’t waste much energy on understanding why; we focus instead on changing how the kid acts, one exposure at a time. When the behavior changes, that circle of connection and causation — thought, feeling, behavior, thought, feeling, behavior — will start to change the why.

But I’m also wrong, and I’m ashamed. Tonight, when Jesse opened the door to tell me what her mask is trying to say, I shoved it closed on her.

I’m not sure why. Maybe I’m just worn out by a hellish year and almost two months of intensive therapy. Or maybe there’s a more hidden motivation. Maybe I’m not sure I can keep it together if Jesse puts into words the inchoate feelings her mask seems to express. I’m not sure I’m strong enough yet to be the unbending shoulder she needs to lean on as she faces those demons. They look awful. They look terrifying.They look so sad.

So I’ll just let this mask haunt me from the kitchen table for a while. Next time Jesse offers to open the door, I’ll try to let it open. She deserves that much.

 

Yay. It’s the last day of school. 

Today was the last day of school for my kids. I’m so happy I could cry. 

Hold on a minute. Just waiting for the tears to come. 

Waiting. 

Still waiting. 

Huh. Never mind. 

********

Jesse had the worst year ever.  it was undoubtedly a terrible horrible no good very bad school year. She didn’t even get to enjoy the simple pleasure of a half-day to close out the year — because every day of 4th grade has been a half day for her. 

When I picked Jesse up today, I also had to carry out two heavy boxes of her therapeutic materials. My biceps almost failed on the walk to the car. It was an apt reminder of how burdensome and challenging this year has been for our family. But we never gave up by pulling Jesse from school entirely, so I guess that’s something. 

I know I know, I’m channeling my Debbie Downer these days. Believe me, I’m well aware of it. I’ve lost my grumpy! How did it happen? How did I move from energetically grumpy to morose and self-pitying?  I need to find my way back to grumpy. 

I can’t believe I just said that. I’ve finally found a feeling worse than grumpy.  

Right, what? Oh, Jesse. Not only did she have a shitty school year, but she didn’t even get to enjoy a school-just-ended afternoon by settling down in a catatonic haze to enjoy marshmallows, ice cream, microwave taquitos, and a Sponge Bob marathon. Instead, it was right back to Rogers for another afternoon of therapy. 

Jesse is so exhausted from all this therapy. After working super hard to control herself at school in the mornings, she’s been passing out on the long drive to Rogers. It’s pretty cute. 


So this afternoon, instead of chilling out post-4th-grade, off we drove to Oconomowoc. I woke Jesse when we arrived, and in we marched to therapy. I displayed to her 3 x 5 cards on which I’ve carefully printed a variety of taboo words like


and


and invited her to resist really hard the urge to blurt those words. 

Good times. 

********

Nick, by contrast, had a spectacular year in kindergarten. He went through periods of shyness and he lacks academic self confidence, but he’s enthusiastic, cheerful, and hard-working (for a six-year-old). Plus he has fun with other kids. I can’t exaggerate how much of a relief this is, after Jesse’s rocky road through her wee years. 

Nick’s teacher says he is definitely ready for first grade. But I will admit: I don’t know what that means. 

Nick wrote this two-sided poem-like thing for Anthony a couple days ago:


If you happen to be having difficulty reading that for some reason, like if your adult intellect has been compromised by normal spelling and American English speech patterns, allow me to explain and interpret. 

In kindergarten, it’s all about phonemic spelling these days. Learn letter sounds, and then spell it like you say it. Nick is quite good at it. I’ll adjust a little on the letters to fix the reversals and mistakes; you just say what you read below, out loud, to sound like Nick:

“To dad, fu-womb Nick. Foe-st it wains, then it sews the sun. The wain-bow is made and the wain-bow is boo-de-fuh. 

“Oh-voe the mountain the wain-bow goes. Makes mow boo-de-fuh.”

I hope that makes things clearer. 

Meanwhile, I am to conclude that Nick is ready for first grade. Huh. 

Also next fall he starts speech therapy. 

********

That rainbow mountain poem will go up on our free art wall, which joins the kitchen area to the mudroom. 

I fancied fine art, made by local artists, in this beautiful open space. I came close. Our cracked post-renovation budget led me to hand a roll of scotch tape to the kids instead of browsing at local galleries. So… The artists are definitely extremely local, and then just replace “ine” with “ree” after the F. 

I admit though, I do like the child-populated art wall. The only troubling piece is this demented take on the Lorax:


That photo of Nick is larger than life-size, and what is with his bony forehead? I get the creeps when I walk too close to it. 

And I surmise that this is the kind of activity they do in kindergarten to get ready for first grade. 

Huh. Maybe Nick actually is ready. He certainly makes a formidable-looking advocate for the trees. 

*********

And of course, I went through the traditional parental entropy that accompanies the final weeks of school. Twice in the past week I simply forgot to make Nick’s lunch. Today, I offered him puffed Cheetos as his snack — a last-day-of-school treat, how awesome am I?

Nick actually balked, insisting on something more healthy. And I actually replied, “I’m not doing it. If you want a healthy snack, ask your dad.”

Anthony rummaged deep in high cupboards, well above my line of sight, and pulled a clif “Z bar” out of the kitchen’s apparent anus. I don’t even know what a Z bar is. Where did it come from, and when? My kids hate packaged bars. We didn’t deign to check for an expiration date. Anthony held it up on display, announcing in a firm and grim voice, “this is healthier.” He shoved it in Nick’s backpack without further ado. 

Then I promised Nick that, when I picked him up after school, I would bring his Kylo Ren light saber and a picnic lunch so he could play with friends on the playground. He’s wanted me to bring his light saber after school time and again all year, and I’ve never gotten around to it. I was determined to do right by him today. 

As it turned out, I didn’t have much of a picnic in me. I filled a water bottle and grabbed that blessed bag of cheese puffs. Done. In a final fail, I forgot the light saber on my way out the door. 

I’m still an awesome mom, because first I pretended I didn’t forget it, and then I pretended it didn’t matter (it did), and then I ignored Nick’s nattering and told him to go play. He’s an easy-going kid, so he swallowed his disappointment and seems to have forgiven me. I suffered no negative consequences at all for screwing this up for him. Hurray for me!

Now I can’t wait to spend a long summer with the kids, letting them down one way or another, hour after hour, day after day, and hoping to get away with it. Wish me luck.

gosh, intensive therapy for OCD and anxiety is fun

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:

IMG_1899

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?

stop sheet picture

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.

 

 

 

Ten things that must be better than therapy

This outpatient therapy Jesse is going through sucks. It hits her right where she hurts the most, and it’s a raw, exhausting, emotion-provoking process. I think it’s the emotional equivalent of what a burn victim survives — dead skin and hardened scabs painfully scrubbed and peeled off to expose fresh raw skin, day after awful day, and a mirror waiting to haunt you as you try to re-discover what’s beautiful under the scar tissue. There is no escaping it if Jesse wants to get better.

Also it takes us out of commission from 2 to 7 pm every Monday through Thursday, when you consider the nearly-hour-long commute each way to the clinic. So I really don’t get to spend any quality time on those four days with my little Nick, who is a delightful, easy-going little guy who serves as an important pick-me-up in my life.

Suuuuuucks.

Sure, I’m already seeing glimmers of hope for Jesse with each new day — some baby steps toward control over the obsessions and compulsions, passing moments of relaxation and happiness, a re-engagement with some simple pleasures in life. Like digging for worms to feed the robins nesting in our front yard. Jesse did that by herself yesterday evening when we got home from the clinic. It was a sweet and peaceful thing to see, something I’ve missed with a deep ache.

Still. I can think of a lot of things that probably would be more fun than therapy right now. Like…

1. Working out or going to tae kwon do classes.

2. Cooking fresh meals that contain actual fresh vegetables.

3. Going on a five-hour hike someplace beautiful, without bringing a timer, a motor activity box, or a submit/resist/competing response log.

4.  Going to an art museum. Without children.

5.  Doing all the home improvement tasks I’d been putting off – a couple tables to plane and refinish, some drawers and shelves to build into 5 closets, all the interior wood trim to varnish, some re-leveling and tile to lay on the front porch, a 3-foot-tall retaining wall to build in the back yard. You know. Little things.

6. Washing my family’s underwear by hand.

7. Going to a local chiropractor with the lowest possible rating on Angie’s List for an adjustment.

8. Beating myself senseless with large sticks from the back yard.

9. Eating a bowl of Japanese beetle larvae raw.

10. Cleaning the men’s toilets at all McDonald’s locations in Milwaukee.

Just sayin’…

 

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:

IMG_1895

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.

IMG_1896

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 call bullshit on it.

It took my breath away.