Shiny happy people all day long

My therapist says I can be less depressed by acting less depressed. I know this is a fairly common idea in cognitive behavior therapy, what with the CBT triangle and all that, but it still tickles me.

The CBT triangle is not something I am very good at, and I think I’ve talked about it in this forum before because it confuses me no end. Thoughts, feelings, and behaviors, in a vicious cycle that you can make or break by changing one of those things. As the folks at the mental institution that failed Jesse pointed out, it’s hardest to change feelings, less hard but still hard to change thoughts, easiest to change behaviors. So, they like to work on behaviors. It’s like the opposite of how I imagined therapy would be.  Instead of, “tell me about your dreams,” it’s all practical. Do this, do that.  Bossy Pants Therapists.  Who knew?

The classic CBT triangle, I was taught by the Institutional Fails, involves hypothetical dogs.  You get bit when you’re a kid, so you decide dogs are dangerous. So every time you see a dog, you feel scared, and then you have an associated behavior, like screaming and running.

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So someone stuck in a dysfunctional cycle like this, to the point where, say, a chihuahua is making them scream and run, might try something. Instead of talking about whether 2-pound dogs are actually dangerous, or about your feelings, the institutional fails will place you in the presence of a dog and ask you to stay there.  It’s called an exposure.  Stay there, and don’t scream and run. Theoretically, you realize in a few moments that the chihuahua is not in fact dangerous, and that in turn starts to change your feeling of fear.

Unless the chihuahua bites you and sepsis sets in and next thing you know, you’re in the ER. Then what?

(By the way ooooh lookie I made a thing in powerpoint!!)

When I draw CBT triangles, I think they come out wrong.  Granted, I haven’t done this specifically with my expert therapist, because we’re still in the “getting to know you and build trust” phase I think, but I like to forge ahead so I’ve been thinking about these triangles. Here’s my basic run at myself, big picture:

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I don’t know.  But yeah, that’s about right. So now I’m supposed to act less depressed by replacing the wall-staring and poor-hygiene behaviors with something else.

I think I’ve tried that a bit already, like this:

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Still not right.  Definitely not right.

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THAT’S IT.  I just need to stop walking around muttering about everyone sucking, and then I will be cured.

The thing is, the alternatives to depressive behaviors and hating people are all exposures, and I do it all the time.  I really do. I may not shower as regularly as I should, or brush my hair in the morning, but I do lots of things to try to convince myself that people — including me — don’t suck.  I volunteer for things and help people and show up and try to do stuff, and I smile and shake people’s hands, but it doesn’t really make me less depressed.  It triggers my social anxiety, it gives me the occasional full-on stomach-gurgling panic attack, but it doesn’t get to the meat of my down-ness. I also have dear friends, new and old, wonderful people who somehow understand that when I say things like “I hate people” and “people suck,” I don’t actually include them.  These people actually tolerate me.  Why?  Why?

I mean, no matter how hard I try to convince myself that people don’t suck, there’s always the news.  Look at the politicians we elect. Look at our stinking president.  Look at global climate change and the global indifference to it.  Look at how hard it is for women and people of color to get a fair hand, still, even now in the 21st century. Look at how we’re treating children at the Texas border.  Look at the way the rich oligarchs are running our world into the ground — look at how much wealth a few people have amassed, while millions and millions of really desperate people could live for years just on the value of the diamonds and trinkets they own.  And it’s STILL not enough to assuage their greed.  They want more and more and more.

I’ve been having recent conversations with my kids about wealth.  What does it take to amass, say, 8 BILLION dollars in wealth?  It’s not just hard work. Let’s face it, most of the richest people are folks who got rich investing other people’s money in someone else’s ventures.  Is it hard work to sit at a desk and roll dice?  Plus it takes a hoarding mentality to keep that kind of wealth. You have to be unwilling to give it away.  How much of that money can one person — or even one extended family — spend in a lifetime?

* * * * *

I think I lost track of myself here.  Right. I was talking about acting less depressed.  Clearly, I can’t just stop thinking people suck.  I also can’t just stop thinking I suck; that’s a big ask.

I can, however, make a birthday cake for Nick.  He’s having a little birthday party tomorrow, and (as is typical of Nick) he made a verrrrry specific cake request.  Flat cake, a little bit of frosting, lots of marshmallow fondant.  Decorated in 2D: castle, moat filled with sea creatures, draw bridge, dragon peering on from the side but not burning the castle down.  I wanted the dragon to be attacking the castle, but Nick says absolutely not. I’m not allowed to add flames. Check.

But I think making and decorating this cake for Nick will make me happy and, for a time, less depressed.

There, so I think I can draft a proposed replacement CBT triangle.

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This is an exposure therapy I can make a run at.  Wish me luck.

 

 

 

You say anorexia, I say anaconda

Nature metaphors are over-rated, especially when they ask us to model ourselves after  feral, instinct-driven animals.

My racing thoughts on this topic began after a friend sent me this tweet, which looks like it’s from @JenAshleyWright (careful attribution is essential in this day and age):

People talk about caterpillars becoming a butterflies [sic] as though they just go into a cocoon, slap on wings, and are good to go.  Caterpillars have to dissolve into a disgusting pile of goo to become butterflies. So if you’re a mess wrapped up in blankets right now, keep going.”

That’s innocent enough on the surface, and I get the sentiment (though I personally haven’t encountered folks who think caterpillars just slap on wings).  However, when one (hypothetically a reference to me, as I hold up my index finger didactically) gives too much thought to these things, the whole “be like a caterpillar” thing falls apart.

Scientific American describes what happens in the chrysalis as a process in which “the caterpillar digests itself, releasing enzymes to dissolve all of its tissues.”

Oh dear.

This starts to feel like a serious existential exploration. Is the eventual butterfly the same being as the caterpillar? Is the caterpillar actually transformed into something else, or does something more sinister and miserable happen — less becoming beautiful and more becoming, say… dead?  Does the caterpillar really want to turn to goo so that its DNA can be recombined to become a butterfly? Can you imagine feeling a compulsion to EAT YOURSELF AND DISSOLVE YOUR TISSUES? Is this a good go-to analogy as you lay wrapped up in your blanket feeling bad about things?

* * * * *

My kids went to a nature preschool at an Audubon center, where they discovered many dead things.  One year a coyote died near a little pond on the grounds, and there its body lay rotting for many months, and then the bones lay there for some more years.  The kids visited the site often and observed the progression.  I loved the teachers because they didn’t make any moral statements about it; rather, they taught observational facts. The coyote died. Its body fed many other things that are essential to the food chain.  The bones slowly disappeared.

There were enormous dead trees that went the same course, named things like Grandpa Tree and Grandma Tree.  They lived and then they eventually died.  As they lived and died, birds and other creatures fed on them, lived on them, raised families in them.  Eventually everything crumbled to fine bits of organic matter and fed the earth.

The kids would hunt and find death everywhere on their hikes.  Parts of animals — entrails, brains, piles feathers, bits of bone, owl pellets — and occasionally the real treasure, an entire dead animal.  There was mostly curiosity on the trail, not a lot of dread.  The teachers would get sticks and let the kids poke, teach gentle informational lessons. Is there evidence that tells us how this animal died? What does the pellet say the owl ate? What type of bird do these feathers belong to, and what type of creature ate the bird?

There was life too, of course — lessons on transformation and birth, the 2-year life cycle of dragonflies, the patterns of leaves on different types of trees, when and where different wildflowers bloom, how to spot poison ivy, the connections between bees and butterflies and everything else, the role of prairies, finding edible plants, and on and on. But underneath the beauty, the truth is that feral nature is an absolutely brutal place; a bitter and painful battle for life awaits most wild creatures, followed by a bitter and painful death.

D.H. Lawrence wrote this haunting little poem called Self-Pity:

I never saw a wild thing
sorry for itself.
A small bird will drop frozen dead from a bough
without ever having felt sorry for itself.

How does D.H. know it didn’t feel sorry for itself?  Maybe, right up to its death, it was afraid and filled with impotent rage — wondering in its little tweety bird brain why it had to be so f*&#ing cold this winter.

  * * * * *

But everyone loves an animal metaphor, and since I’m working very hard on being popular these days, because I like people so much and I want to spend lots of time with lots of them, I will now use an animal metaphor.  I will make it plain and simple, because I am not sophisticated.

Anacondas are these mostly large, scary constrictor snakes. They are non-venomous, but they are still bad news.  They lurk, camouflaged, in the murky waters of steamy jungle rivers, waiting for hapless prey to stop by.  An anaconda will wrap its muscle-bound length around its meal and squeeze the living hell out of it, either suffocating or drowning it, or stopping blood to the brain and causing ischemia.  Once the prey is dead (so kind of Mr. Snake to wait), the anaconda swallows that meal whole.

This, as far as I can tell, is anorexia in a nutshell.

When Jesse was first diagnosed, the kids couldn’t remember the label.

“Anna-what, mom?”

“I have an eating disorder.  Something called, um, Anna-rook-sa.”

“Jesse has a thing, I think it’s called ano, ano, anna… um, I don’t know. Mommy, what’s it called?”

I should have told them to call it anaconda, they would have remembered that.

Like an anaconda, anorexia lurks in the brain, hidden behind other labels and tucked carefully in the armpit of low self-esteem.  It sits camouflaged behind all the dumb-ass cultural norms that objectify the human form, especially the female one, and ask girls to build their self-esteem out of how they look instead of who they are and what they do.

For Jesse, it slithered up behind the weight gain and then the weight loss she experienced from trying a medication for her mental health.  It masqueraded as her body’s adjustment to med changes until it started crushing the life out of her, denying her brain and muscles the energy and mass they need to grow and thrive.

That’s a pretty good metaphor.

Onward:  One of the only animals that can take out an anaconda is the mighty and beautiful jaguar.

I am a jaguar, mighty and beautiful. (Intone it with a proud stance and a fist in the air, for full effect.)

Like the jaguar, I have stealth, speed, claws like ginsu knives, and a bite that can crush bone.  This is how I will take out the anaconda, aka, Jesse’s anorexia.

GRRRRWOOOOOOOOWR.

No no no no no.  And this is why animal metaphors are of limited use in real human life.  I am not a jaguar.  I am not stealthy, speedy, or bone-crushing.  I am just a human mom, and Jesse is just a human girl, each of us trying to make it to the next day without squeezing the joy out of each other.

* * * * *

I will say this though.  Life with a child who is anorexic feels very wild and feral.  My world is a brutal place: a bitter and painful battle for Jesse’s life awaits me each day, as I try to protect and extract her from the anaconda inside her.

I wake up slightly terrified and already exhausted most mornings, wondering if today is a day when Jesse eats enough. Is today the day I take her to the ER? Is today the day her weight finally goes so low that her body starts attacking her heart?

I know each morning she looks in the mirror and sees her distorted self, fat and hideous in her eyes — but in reality, hungry and hollow.  Still so beautiful.  But I can’t fix that for her.  I can only feed her, hoping that her brain someday has enough energy to sensibly process fact and fiction, emotion and reality.  I slouch downstairs and plan her day’s meals in my mind. I eventually make breakfast and call to her.

Many days — though not always anymore — she comes down yelling, sometimes with a charge and a few slaps thrown in for good measure.  WHY DO YOU MAKE ME EAT?? WHY???  WHY CAN’T YOU STOP CARING ABOUT ME, LIKE OTHER PARENTS DO?  YOU WON’T BE SATISFIED UNTIL I’M FAT!

Onward ho, with moments of misery and yelling scattered through the day.  Many days, I fail to keep my cool and yell back. Some days, I do better.  I know — somewhere deep down that I can’t reach in the moment — that I’m yelling at the anaconda, not my daughter.  I want to kill it so bad.  I want it to stop squeezing the life out her.  I would do anything to make it stop.

But how is she to know that?  She only knows that my yelling is directed at her. So we battle all day long about food and about her body checking, and she grows more and more sure that I hate her.  In my world, that’s what love looks like when an anaconda attacks your child.

 * * * * *

On a day when we’re trying to have fun — it’s summer after all — we hit the pool at the gym.  We walk in the main doors and Jesse is all over me, loud and proud with her anger and distortions.  I CAN’T PUT MY SWIMSUIT ON, I’M TOO FAT. WHY DIDN’T YOU BRING [whatever item she refused to wear last time] SO I COULD WEAR THAT?? WHY ARE YOU LOOKING AT ME THAT WAY?? WHY ARE YOU ALWAYS SO ANGRY!!

She chases me down the hall, hitting my back with her fists.

I try to calm the anaconda, try desperately to hold onto my equanimity as people stare and my discomfort grows.  We make it to the family lockers and Jesse goes into a dressing room alone.  We can all hear her yelling at her image in the mirror, random animal noises of misery.  I walk in to try to move her forward, and I fail.  Instead I end up lecturing her about how embarrassed I am by how she treats me in public, and as I grab her wrist to stop her from flailing she screams out, STOP HURTING ME, YOU’RE HURTING ME!! I step out of the room into a central area, where two parents and four kids are staring at me, unblinking.  My son Nick has already escaped to the pool.

I ignore the strangers.  I gaze down in utter humiliation and fuss with our pool gear.

Next time, I’ll shrug, look them in the eye and say, “There’s a large constrictor snake in there. I was just trying to get it off my daughter, but she doesn’t want my help.”

 * * * * *

It’s been nearly a year since the anaconda joined us in the kitchen and in Jesse’s body.  It is a relentless predator, but I hope that I’m more relentless.  I go through so many emotions.  Fear, anger, desperation, humiliation, confusion, contrition, frustration. I weep every day at least once, often after walking into a closet so my kids won’t see me. I wish I could find acceptance and peace, but this is a hard ask in the wilderness.

When Jesse’s tics are coming on, sometimes I say a thing to her. It’s the same thing I say to myself when I feel the rage coming on — if I’m able to slow down and find the space to say it.  This feeling, this need inside you, it’s just one piece of you.  You can send the rest of your mind to the little space inside you where that feeling is.  You can observe it there, accept it without judgment.  You can look at it from any angle you want. Then you can say no to it.  You can put it in the parking lot.  You can tell it to wait.  It’s not all of you.

Some days I succeed, some days I fail.  As for Jesse’s anaconda, it’s still wrapped tightly around her after a year.

But it hasn’t killed her yet. The battle is still on.

 

 

 

I’m baaaaack. Still grumpy

It has been roughly a year and eight months since I quit writing in this space. It’s been so long that the entire WordPress interface has changed, so it took me five minutes just to navigate to the + sign that allowed me to start this post.

You are so lucky that I was successful, because I know you’ve been missing me, dear reader.  Or maybe you have no idea who I am.  It doesn’t matter.  Either way, I am still serious about my grumpy.

A lot has happened since October 2017.  Back then, in the dark ages, Jesse had built up to a cocktail of 4 or 5 meds to manage her behavioral and emotional needs.  I had also started taking citalopram, the SSRI that helped me pull out of a deep depressive funk.  Citalopram-Uh-Whamma!

It feels like a million years ago; we’ve come a long, hard distance since then.  here’s what’s been happening, condensed highlights edition.

One, I’m still really grumpy. I abandoned this blog but I didn’t abandon my shitty attitude. I’m trying to spruce it up by showing grumpy gratitude, which is my new thing, but deep down, I still hate people and I’m just totally dismayed by humanity.  Which may help explain why I’m in therapy in earnest, to help me cope with all the shit that’s going on in our family’s life and the world, and also to address some deeper long-term issues between my ears.  Illustrative of the process is this recent exchange:

Me: I feel like when I learn to cope positively with some aspect of my life, my brain hunts down something else to feel overwhelmed about. There’s always something I can despair about even when things are going well at home, like the kids in the border concentration camps.

Therapist: Maybe it’s not despair. Maybe you just care. Maybe you’re just a kind person.

Me:  <silent WTF>

Also about a month ago I weaned myself from citalopram.  I was noticing a total lack of energy that didn’t make sense.  At first citalopram had given me energy back, because it helped me overcome a significant bout of depression.  But after a couple years it was time to get off it.  So here I am, in therapy, without meds, getting by.  Every two weeks I go to therapy with lots of problems, and about 55 minutes later I come out cured.  Fantastic.

Two, Jesse is fighting anorexia.  Add it to the hopper for this poor kid.  The list of labels just keeps growing.  A few months ago she participated in a youth panel on mental health issues, in front of an audience of hundreds.  You could have knocked me over with a feather as she went through her list in her sweet, quiet voice.  OCD, Tourette’s, depression, anxiety, anorexia.  She hadn’t been sure she wanted to admit that last bit, the new bit, but in the end she did.  So that’s been our Mt. Everest for the last year or so, you know, trying to keep her from collapsing or damaging her heart for life or dying, working hard to keep her from hospitalization and spare her the bitter, icy, indifferent grip of institutional treatment options and a feeding tube.

Three, anxiety hit Nick like a freight train this year, and no wonder.  He has a compassionate soul and is just an amazing little person, and his fears for his sister have spilled out into the rest of his life.  So he has his own therapist too, and she is the wife of my therapist.  It’s all in the family here.

Four, speaking of Mt. Everest, we have another dog. Her name is Everest and she is a full-throttle beast of a poodle.  Here, lemme find a few pics.  Because dog pics make everything better, and I am completely and utterly in love with her.

This is how she treats the kids.  She thinks they’re comfie seats.

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Good girl, Everest!  Good job suppressing Jesse!

She twerks.

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What a beauty, my good girl! Such a good dancy-dancy poodle girl! Such beautiful dingleberries!

And of course she does much worse than twerk.  Everest is a bounding maniac.  She blocks and tackles us on the stairs. She’ll drop a tennis ball at my feet as I sit, put her face one inch from my nose, and bark wildly at me until I play with her.  She attacks all guests — lovingly, but it’s awfully intense.  Also she pees on them if she gets too excited.  She likes to sleep porn-doggy style, flat on her back with her rear legs splayed out, her ass placed exactly on the pillow where my head is supposed to be. One day when I took her for a walk, she literally pulled me over when she started running, and she dragged me down the street a few yards before I could bring her to a halt and get back on my feet. Totally humiliating, but also, you go girl, you are a powerful beast of a dog despite your shee-shee looks and boujee breed reputation!

Everest is a poodle, and hence the second smartest breed of dog by most reckonings, and hence she enjoys working on a Rubik’s cube:

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Who’s my good girl, who’s my big smarty pants doggy?

Also she knows what to do with a Donald Trump Dammit Doll (bite, death shake, pull out stuffing, deliver to mommy).

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Good girl. Good dog! Such a smart dog, you even get politics, whoo-shjoo-boo-shjoo!

She is so smart that she thinks she can sit like a human.  IMG_1985

Good effort, my big beauty!

Everest weighs well over 60 pounds, so she is more than ten times as big as our original poodle, little Madeline. Here is how Madeline feels about having boisterous Everest join our family — grim, barely tolerable, horrifying state of affairs.

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There’s a strange love-hate kinda thing going on between these dogs, in which I think Madeline perceives herself — sadly, pathetically, erroneously — as the victorious dominatrix.  But Everest is wise and big and tolerant, and no amount of tiny-dog-snarling keeps her down.

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     * * * * * * * *

Enough about the dogs.  Let’s end with thoughts on what matters most here:  Me.  My therapist says that I have compassion fatigue, caregiver fatigue.  He says that I should work on self-identity and self-care, that I should find things to do for myself, things that take my mind off the worries and responsibilities.  He says that I should help my kids be more independent like an American mom, instead of weaning them late to responsibility like a Korean mom.

He’s right on all these fronts. I guess. Yesterday he suggested again, for the third or fourth time, that I would benefit from working on a sense of self-identity, apart from service to others.  I threw up my hands, literally. I don’t know what that means, I blurted.  I don’t even know where to begin that journey. I don’t have an identity apart from what I do for others, do I?  What’s the point of existence if it’s just to satisfy my own needs?  How can that be a life of meaning?

He stared at me for a moment and did The Therapy Thing.  “Why do you think you feel that way?”

Uuuuuuuugh.  Aaaaaaaagh.  PSPSHHHSPSPHSHPHHHH. (is that how you spell a raspberry?)

Well and so I had a big cry and talked about deep memories and I don’t know if it’ll help, but I was exhausted when I walked out of his office.  It’s all good. I’m cured until I see him again in two weeks.

But… this is why I’m going to try to write again.  This blog was one of the few things I did just for me, until I quit a year or two ago to make space for all the needs of my family and all the volunteer commitments I made to school organizations and other stuff.  I’m going to discover my own, independent me, my big beautiful grumpy me, not Me-Too but just ME!  Me me me me.

I bet you’re really looking forward to it.

“Me too” isn’t good enough

So everyone is going to post “me too” on their facebook pages for a couple days, because Harvey Weinstein has finally been outed for the pig we already know most Hollywood producers are and all the women are coming out. By saying…

Me too.

Yeah. And?

* * * * *

The summer of 1978, when I was 11-going-on-12, terrycloth halter-top short-short jumpers (one-piece) were apparently a thing.

I have almost no memory of the things I wore when I was a kid. I remember my rainbow-emblazoned blue jean gauchos, because rainbows, and a fluffy sweater with clouds and a rainbow, because rainbows, and that’s about it.

But I most definitely remember the halter top jumper thing, because one day that summer I was wearing it when I rode my bike to the local convenience store for candy. As I stood looking at the candy aisle, a grown man approached and stood near me, eyeing me for an awkward length of time. It made me uncomfortable, but what could I do? I kept inspecting the candy. Finally, he spoke.

“How old are you?”

I looked up at him nervously. Had he really spoken to me? “Eleven.”

“You got the biggest jugs on an eleven-year-old I ever seen.”

Looking back into my memory’s eye, I would guess this pig was in his late 20’s. He moved away before I could process what the hell he had just said to me, and specifically what “jugs” were. Being a bright little girl, early to puberty and shy about my developed breasts, I figured it out before I left the store.

I had a strange numb feeling all over me as I walked out and hopped on my bike. I looked around to make sure the man wasn’t still around.  Why would a grown man say something like that to me? I looked down at my chest in shame. Was this jumper just letting me hang all out? Were my boobs just that huge? Biking home, I tucked my torso into as much of an inward-curving C as I could, a feeling of dirtiness and shame filling the confused pubescent hollows of my mind.

I relived that moment in my mind again and again through the years. If only I had found a quick reply to that foul man. In my younger years, I had fantasies of going straight to the shopkeeper, who knew my face from regular visits, and pointing the man out to him.  As I grew older, the fantasies changed. Sometimes I had a witty comeback, and sometimes I just cussed him out. Sometimes I screamed “PERVERT!!!!” Sometimes I rushed him and kicked him between the legs, leaving him groveling on the dirty floor as I proudly marched off.

I never wore that filthy halter-top again. You never caught me in a tube top of the 70’s. I never wanted to be approached by a dirty old man again. Until the day I told my husband about the encounter, it was my private little shame.

* * * * *

The summer of 1979, when I was 12-going-on-13 — or was it the year after, when I was 13-going-on-14? — I attended my first year of a local summer music camp at the University of the Pacific. I was in the piano program, and I became friends with a girl named Erica who also played the piano. Erica was gregarious and confident and easy with words, exactly the opposite of me. We hit it off. When we had free time, we wandered through the pretty campus of UOP. There were a variety of camps going on, including some sort of senior citizen gatherings.

In our wanderings, we met an old man. I don’t remember how we were introduced to him, whether he approached us or Erica approached him. She was just so friendly. We found him a few times during the week and had silly and energetic conversations. On our last visit to him, he said he could read auras. He would read our auras, he said; we just had to sit in front of him and he had to touch our heads.

So I innocently and gamely sat in front of this sweet old man, this grandpa. He placed his hands on my head and brushed his fingers through my hair. His hands swept down my back and under my armpits. They continued to the front of me and caressed my breasts.

I sat frozen and startled. I didn’t understand what was happening. It only lasted a couple seconds, and then he took his hands off me.  He told me what color my aura was. I stood up and stared at him. I managed to say “thank you” — I told him thank you for copping a feel! — and ran off. I don’t remember anything else, except that I didn’t wander all over the UOP campus after that. I couldn’t quite put my finger on why, but I just didn’t feel safe anymore.

I relived that moment for many years after, just like I did with Jug Man. Aura Man seemed like such a nice and innocent old fella. Did I do something wrong in not seeing that coming? Did I do something that told him it was okay to touch my boobs? Was he really trying to touch my breasts like a pervert, or did he actually need to do that to see my aura? As I grew older, I asked different questions. What makes a man in his 70’s think it’s okay to touch a teenager like that? Did he have children? If he had a daughter, what would he think of someone doing that to her?

Anyhow, I knew somehow it was my fault. What was I doing chatting during summer camp with a stranger? Why would I agree to let him put his hands on my head? Why would I assume I was safe just because there were people all around us? I must have flirted in some way that told him it was okay.

Until the day I told my husband about the encounter, it was my private little shame. I never even told Erica what had happened.

* * * * *

In 1993, I began my career as an attorney at a well-respected, stable law firm. In the first few months on the job, I was called in to the office of Phil Cohan, a partner with a product liability defense practice. I sat in the armchair facing his desk. As I sat down, that chair just sank and sank. In my nervous state, I blurted, “Wow, this chair is really low and uncomfortable.”

Phil looked at me with a twinkle in his eye. “That’s why I have it. A young associate sits down in it with a short skirt. She sinks down, her knees come up, and…” He put his hands up like he was making a little shrug, his eyebrows raised.

I couldn’t believe what I had just heard. I wanted to walk out.  But there I sat, numb. Nothing came out of me.  I just frowned and stared at him. He stared back for a moment, apparently waiting for something. When nothing came, we got down to the legal work at hand. I guess Phil didn’t get what he wanted out of the exchange, and nothing like that ever happened again with me.

I relived that moment for years too, just as I had with Jug Man and Aura Man. It was hard for me to believe it had actually happened.  I was grateful my knees were tight together when I sat. Had I nonetheless done something that encouraged him to make such an inappropriate and offensive comment to me? Had I inadvertently flirted with him? Were my suit skirts too short?

I never did anything about it. I needed a job, I had student loans and bills to pay. I needed to focus on developing my legal skills as a practitioner, not dealing with the bullshit fall-out of a sexual harassment complaint based on one shitty comment from a partner who already had a reputation as a philanderer and paid no price for it.  I avoided Phil as much as possible; that was my solution to the problem. The price I paid was an anxiety attack every time I saw Phil’s face.

I should have been brimming with self-confidence and self-esteem and ready to pound Phil into dust. I graduated from a great law school with great grades, and I had a reputation as a high-quality, ethical young lawyer. But in that moment when I sat in his sinking chair, Phil took it all out of me. I was just a 12-year-old girl in a halter top again.

Not long into my career, I began to favor pantsuits and longer skirts. I never really told anyone about the encounter, except my husband. Sometimes I wondered what would happen if I told my dad, but he had a bad heart and I didn’t want to do that to him.

* * * * *

Shall I go on? I could. As far as I can tell, every woman who’s made it to my age has a gallon full of tales to tell.  Eventually reliving all that crap gets boring, the way a cramp in the side gets boring, the way we can sometimes ignore the never-ending ache of arthritis. But maybe the stories demand telling, because so many of us just let them go in real time, the way I did again and again.

“Me too” is a meme, and as far as I know, no meme has ever changed the world.  Don’t waste your energy jumping on that bandwagon. “Me too” makes you into a blank statistic.  You have a “me too” to tell? Just go ahead and tell it. Tell your daughters and sons your actual stories. Shine a light on it all, so that maybe someday the Harvey Weinsteins and Jug Men and Aura Men and Rich Lawyers and all the other jerks in this  world won’t be able to get away with shitting on our daughters.

mean girl

Nick came out of school yesterday fighting back tears. I asked what was wrong.

“[Pseudonymous] Billy says his mommy doesn’t like you so he can’t come to our house for a playdate, we can only have a playdate if I go to his house. Is that true, mommy?”

* * * * *

Billy and Nick have been friends ever since they met. They play well together and laugh and get along. Nick has occasionally referred to Billy as one of his best friends. Billy has been to my house a number of times, including just a month ago, right before school started.  Billy’s mom came too on that last occasion, when I threw a back-to-school kid bash, with slime-making and tie-dye. She hung out and sat on my porch and drank the champagne I offered parents as their kids trashed my house and yard.

When I first met Billy’s mom, she complained about being lonely, because she was new to the area and wasn’t sure how to meet people. I invited her to get involved in the PTO. Several other parents and I, who loosely hang out together after school on the playground, invited her variously to join in playdates and get-togethers. I invited her family over for Thanksgiving, and they came. I listened when she told me about why her kids are unvaccinated and how she distrusts the medical profession. I pushed back about the non-existent link between autism and vaccines, but I saw quickly that she was unreceptive to the science, so I let it go. I try not to judge individuals, though I’m happy to mock trends. People come from a lot of different places and have a lot of reasons for ending up where they do in their heads.

There were signs, Anthony tells me, that Billy’s mom maybe isn’t a good fit for me. She tends to complain a lot. A lot, about a lot of things, and not in a laughing, eye-rolling way but a judging, negative way. But also, she doesn’t like it when people are negative and complain. She complains about how people treat her, but she’s also kind of rude. I’m okay with rude, but there’s that whole problem of two-way streets.  She complains about toxicity in the world around her, she complains about teachers and schools and doctors and materialism, she just complains a lot. In one strange and unprovoked moment (at least, not in any way I observed), she told me my blog isn’t funny. Which is fine, but it was kind of a weird thing to say to me on a playground. She also seems really, really uncomfortable when the issue of Jesse’s mental health disabilities comes up.

Billy’s mom started  flipping visibly to somewhere negative some time last spring, I think. She started being extra rude to me. She would walk away from me on the playground when I ambled over to say hi. Sometimes she would respond, but more with a smirk than anything else. She would avoid me in a catty, middle-schooler sort of way, like “I’m glancing over my shoulder at you, person who is beneath my coolness and dignity.” I’m okay with that. I’m strong cheese, and very direct, and I’m sure some people can’t stand the stench of me. But also, I noticed it wasn’t just me she was doing it to. So I was thinking maybe something’s going wrong with her, like she’s depressed or having some kind of difficulty, and she’s struggling to find space to engage in banal chatter.

But then once in a while she’d show up, like she did just last month at my house. Dropping her kids off for a couple hours so they could trash my house, coming back to drink my champagne after she got her time off. I didn’t think anything of it. I was glad to offer her some respite, to offer her kids some fun, and to give Nick a chance to spend quality time with his dear buddy.

* * * * *

All of which rattled quickly through my head as I held Nick’s hand and walked to the playground after school yesterday.  Billy’s message was news to me. My home was no longer acceptable for playdates because his mommy doesn’t like me.  Huh.

I didn’t really know what to say to Nick. I just saw that he was so upset — embarrassed and hurt, and feeling awkward. What do you say to a friend who offers you a message like that?

All that came out of me at first was, “I’m sorry, Nick.” Then, as he continued to sniffle, I added, “We’ll figure it out.”

Sometimes, meaningless phrases come in handy.

Nick ran off to play.  Billy’s mom was standing with another mom, a friend of mine, on the playground. As I approached to within 10 feet, she literally turned her back to me. I said hello by name. She ignored me and said something to the other mom about needing to go check on something and walked away. Being me, I said a little loudly to her back, “IT’S NICE TO SEE YOU TOO, [insert billy’s mom’s name].”

She ignored me and kept walking. She spent the next 20 minutes on the playground talking to other people and pretending I didn’t exist.

Nick spent most of the time acting a little unsettled and avoiding Billy.  And anyway, Billy seemed to be busy and completely unaware of how his words had rattled Nick. Or maybe he was feeling just as weird and awkward as Nick.

As we were preparing to leave, Nick came over and asked if I had spoken with Billy’s mommy. I told him no, but if he wanted a playdate with Billy, he could ask. Maybe that was wrong, but I always encourage my kids to speak up for themselves, and I wasn’t prepared to approach her on the playground because I didn’t know what would happen.

So my little boy did what I suggested. As I headed for the car, he trotted nervously over to Billy’s mom to ask if they could have a playdate. He ran back to me a moment later, fighting back tears again. I asked what happened. He choked the words out. “She just said, ‘we’ll see.'”

I kept walking. I grabbed Nick’s hand. I tried to suck some of his kind, gentle sweetness into my body. I used it to help fight off my feral instinct to march over to Billy’s mom, confront her, smack her upside the head, and teach her a mighty harsh lesson about messing with other people’s children. I made it to the car without doing anything I would later be ashamed of.

* * * * *

Billy’s mom tends to talk and post facebook memes about toxicity in people and systems around her. She seems to think it’s everywhere.  I don’t know if it has ever occurred to her that the toxicity might be oozing from her, and not at her. Which might help explain why she finds it wherever she goes.

Me, I know I’m toxic. I know it in my bones. Most of my friends think I’m too hard on myself, but the truth is, we’re all toxic in the right time and place, the same way gluten is fine for most of us but will slowly kill someone with Celiac disease, or bees are essential to life on earth but their stings will kill someone with an allergy.

So when I look at something that’s gone wrong, mostly I look to myself first, and anyway that’s the only thing I can control. I walked off that playground blaming myself for letting my dear Nick get his feelings hurt. When I wasn’t having to answer questions and engage in conversations with the kids about this painful situation, my head was filled with my own questions about what I could and should have done differently over the past few months to not end up here.

Also I was thinking awful things. Things like, I hate people. This is why, during long stretches of my life, I’ve avoided trying to make friends. You just never know when people are going to suddenly suck. I’d rather play with power tools in a room by myself than have to deal with difficult people. Power tools don’t say stupid things, and when they hurt you, you can fix it with stitches or bandaids. Very simple, and no judgey-ness.

* * * * *

But here I was, stuck with two kids in the car, two kids who needed very much to process this painful situation. Jesse was pretty angry and disturbed. Why, she wanted to know. Why would Billy’s mom say that? Nick was, age appropriately, focused on the issue of when and how he would have a playdate with his friend. But also he admitted he was upset about what Billy had said about me.

We debriefed the best we could, occasionally touching on the subject through the evening. I think I said mostly the right things. I asked my kids not to judge. I reminded them that people have all sorts of differences, and they have all sorts of reasons we don’t know about for acting the way they do, and we’re not required to like each other. On the other hand, we are kind of required to try to be kind to each other. Me? I make every effort to never let my kids hear me saying anything about their friends’ parents, and over the years we’ve had many conversations about how to speak kindly to friends about their families. I guess Billy’s family doesn’t share these values, or maybe Billy’s mom just didn’t think through the realities of children and their big, open, innocent pie-holes.

Nick expressed a hope that at least he could go to Billy’s house. I asked him a question, with some doubts in my heart about whether I should. Do you want to go play at a house where the mommy says she dislikes your mommy so much that her kids can’t come to your house anymore?

It was a brutal question, I know. But I also know Nick. Like his dad, he holds a lot of stuff in, a lot of rage and anger, and if it ever comes out… Everybody better watch out, because it won’t be pretty.  Nick considered the question and groaned out an answer. “Yeeeeah, maybe not…”

We practiced some strategies for how Nick might respond to Billy if he brings this up again. “Please don’t say that about my mom.” “You hurt my feelings when you talk about my mom that way.” “Stop. I don’t like it when you talk bad about my mom.” “We can be friends even if your mom doesn’t like mine, can’t we?”

It all made him uncomfortable, but the situation had been forced on us and we needed to confront it.

* * * * *

I give myself no credit for taking the high road in this story. When Nick came out of school and shared his little vignette and his snuffly tears, I was so angry that my hands were shaking and I was near tears myself. I outed Billy’s mom. I told my friends on the playground what had been said.  I called one of my dear friends later in the day to debrief and ask for her advice. Was I over-reacting? How could I find my way to a place where I responded with compassion and not anger? I texted a couple other friends for more support and advice, and received the positive encouragement and love I needed.

I eventually calmed down. After Nick and Anthony went to taekwondo, I sent Billy’s mom this email (I couldn’t use messenger because she apparently unfriended me on facebook):

Nick came out of school today in near tears. He explained why he was upset: [Billy] told him, my mom said she doesn’t like your mom so I can’t come to your house for a playdate, we can only have a playdate if you come to my house.

Nick was obviously very hurt and embarrassed, and sad because he really likes [Billy]. I was sad as well, particularly because I really don’t think [Billy] intentionally hurt Nick’s feelings.

Nick is one of the sweetest, kindest people I know. Whatever issues you have with me, he doesn’t deserve to have them placed on him. Please take a moment to speak with [Billy], and ask him not to repeat to Nick whatever denigrating things you’re saying to him (or within his earshot) about me. Whatever issues you have with me should be between you and me, in an adult world. They definitely shouldn’t be unloaded on Nick.

For my part, I simply don’t share with my kids any issues I might have with parents of their friends, for the very reason that [Billy] illustrated today. You can be sure that I have never said anything to my kids about any concerns I might have with you. I would never want to hurt a sweet child like [Billy], however unintentionally, in the way that you have hurt Nick. I did have to answer questions today about why you would bad mouth me to Justin. You deserve to know what I told my kids: [Billy’s] mom is entitled to her opinion, and she has the right to choose her friends, just like me. She’s also entitled to say whatever she wants to her kids, but I think it’s incredibly unkind to make their friendships subject to her adult dramas.

I have tried my best since we met to reach out to you with good intentions, especially because you expressed such loneliness. I’ve welcomed you into my home and holidays, I’ve invited you into my very open circle of friends, and I’ve tried repeatedly to build whatever connections we can. You are welcome to reject my friendship, with whatever judgments you want to impose, but I would ask that you try at least to show basic courtesy on the playground and in school settings, as a example to the children who observe and wonder about the adults in their world. Your ongoing behavior since last spring — refusing to even look at me or to respond to my greetings except when absolutely forced — is immature at best, and at worst smacks of the kind of bullying we work hard to eliminate from our schools. It doesn’t hurt me in the least, but it will end up hurting your kids if and when they model your behavior.

I wish you well and hope you find answers to the things that are hurting you.

I re-read it this morning and thought to myself that it captures a nice balance of direct, passive aggressive, smug, kind, and also slightly threatening. Classy.

Not.

I mean, I don’t know what I’m supposed to do. Let everything go? Let a mom unload her emotional needs on her kid, and let that come land smack on my kid’s head?

Not for me. I don’t generally stand down in the face of bullying. So I vented my spleen and hit the send button, with some (but not many) reservations. Jesse had just proudly — so proudly! — finished her homework without too much of a struggle. Anthony and Nick weren’t back from martial arts yet, so we headed out to Baskin Robbins for a treat.

* * * * *

Jesse still wanted to talk about the situation with Billy’s mom, as we chowed on milk fat and sugar. When she raised it, though, I found my heart tacking hard against that storyline. It was really weird. I answered her in a way that even surprised me (since I hate people). I asked her to stop thinking about Billy’s mom, who’s just one person in our lives, and to think about all the thoughtful, kind, wonderful people in our world who fill our cups every day and make life better. We talked about families, parents, and kids who’ve lent us a hand when we need it, without hesitation; who’ve supported us emotionally through Jesse’s mental health crises, without judgment; who’ve showered attention on Nick when mine was diverted by Jesse’s needs; who’ve accepted us with all our flaws (and lord knows I’m full of them), with open and accepting hearts; who have become our dear friends, our village, our Wisconsin family.

That is just… so…

(Thanks citalopram.)

Anthony spent the evening showering me with kindness and love. There was almost a desperate quality to it. He doesn’t like it when I get down on myself, and he knows I tend to look at situations like these and spend a lot of time thinking about what I could have done better and differently. Billy’s mom can’t bully me down into hating myself, but my own inner bully can.

I woke up this morning still thinking about the situation loosely, and worrying about Nick. But as the morning passed, I realized that Jesse was taking care of things, just like the best kind of big sister and daughter. She and Nick hung out in bed for a while together, talking about whatever they were talking about. She shared with him and made him laugh and tolerated him patiently. He was his usual cheerful self by the time she was done.

After breakfast, Jesse worked quietly on something for a while, and then brought me a hand-made sticker to put on my shirt.

IMG_4673

Moms are aw[e]some.

So are sons and daughters and husbands and friends, I thought, as I planted that sticker right in the middle of my shirt. I’m going to wear it all day. I was proud of Jesse for showing Nick and me such kindness, for having so much empathy for the uneasiness and sadness around her – even as she struggles every day herself. It occurred to me that Jesse is already more mature and self-aware than Billy’s mom. She doesn’t blame other people for her own misery, and she already knows that lifting others up is one of the best ways to ride the hard tides that her mental health challenges throw at her.

She’s a good role model for the mean girl in me.

psycho killer, qu’est-ce que c’est (on the joys of a medication cocktail)

I’ve got to tell you about this journey so you understand how a family that’s generally opposed to a bunch of prescription meds ends up at a place where our 12-year-old is taking a cocktail of four prescriptions every day.

1.  SSRI

A couple years ago, we finally gave in and got Jesse onto an anti-anxiety med, an SSRI. That was a hard decision, because she’s still very young. But she was so strung out, so lost and sad and angry, for so long. Therapy wasn’t cutting it, despite years of effort. We knew we needed to try, and indeed the citalopram (Celexa) helped.

And then it didn’t.

2.  Clonidine (blood pressure med)

So two springs ago we ended up at Rogers hospital, a mental health institution, at which they increased the citalopram to a maximum adult dose (for a 60-pound kid). They also added clonidine, which is used to treat high blood pressure in adults. In very small doses, it’s supposed to help with tics, according to the Rogers people, but everyone else seems to use it as a sedative and sleep aid. We were pretty fried by the time we were at Rogers though, and we went along with it despite many misgiving. It kinda-sorta helped.

Except it didn’t really. Jesse still had all the tics and obsessions going, and the clonidine made her really tired.

So we threw up all over the Rogers experience last fall. We abandoned intensive therapy and moved on to a psychiatrist simply for meds, with the goal of freeing Jesse from the shackles of seeing shrinks every day who suggest that she sucks the way she is. (Of course that’s not what they say; but she’s a smart kid, and she sees through the euphemisms.) (Do you like all the hissing?)

Our new psychiatrist, Dr. Hale-Richlen, is really interested in PANDAS and PANS, two syndromes that involve inflammation in the brain and yadda yadda. She’s really into inflammation, and she wanted to do a mountain of bloodwork to explore the possibilities.  We went along with it, because Jesse was so wretched and more information is better than less. Usually. There was little evidence of any inflammatory process in Jesse that would justify PANDAS-style treatments, but we did discover Lyme disease, which we were therefore able to treat. Sigh. Also we learned that Jesse hadn’t mounted an immune response to the pneumonia vaccine, so that could explain why she had had a couple tough cases of pneumonia recently. Another sigh.

In other words, despite my skepticism and misgivings about Dr. H-R’s explorations, we had learned some really important facts. I was grateful, and Jesse’s physical health improved. But things still sucked badly for her behaviorally. We discovered that Jesse couldn’t miss even a single dose of her citalopram, which she took twice a day, without falling off the rails. So Dr. H-R suggested a different anti-depressant, an extended release version called fluvoxamine. We went through the painful process of introducing  it and then taking out the citalopram, which took a couple months and was pretty hard on Jesse’s body.

It kinda-sorta helped. Jesse was able to go to school full-time again, and she was trying to get back into extracurriculars, but it was all still a struggle. She was overwhelmed and exhausted every day by her tics and obsessions. Plus the mid-day dose of clonidine sometimes left her in a kind of stupor, which made her fall asleep randomly during school. She was rude and obnoxious and oppositional and lots of other words that aren’t very nice ways to describe people.

Last spring, when I finally started taking my own anti-depressant, I experienced what the right med can do for a person. I am now transformed. These days I emanate a soft and peaceful shining light, one that illuminates clouds from beneath and renders night lights superfluous.

Yeah, that’s right, you heard me right. Why are you looking at me like that?

Well. At least I’m not so depressed anymore. I’m coping well these days, and I feel really good about myself most of the time. I’m still weirdly productive. So I have a new concept of what the proper med maybe-probably-ideally should be doing for Jesse. The fluvoxamine wasn’t cutting it. Jesse was still coming to me almost every day to tell me, “Mommy, I feel sad for no reason.” And she was still more blank than made sense, lost between her ears somewhere.

3.  Piaglitazone (diabetes med)

In late spring I asked Dr. H-R if we could try a switch to a third med. After all, it can take some time to find the right anti-depressant, everyone says. In keeping with her eternal focus on inflammation, however, the doctor talked me up a storm about how, in some people, an inflammatory process can limit the efficacy of SSRIs. There were many big words and ideas that I could follow in the moment, but not retain. She suggested that, before we begin the painful process of switching to a new anti-depressant, we try something else. Tempting.

Piaglitazone is an insulin-sensitizer used to treat diabetes in kids. (I think I have that right.) It’s also occasionally prescribed in very small doses as a supplement to an SSRI.  I don’t know how common this is, but Dr. H-R had obviously given it a lot of thought. (I try not to google psychiatry-related things too much these days. It can be scary, and it’s always way too unfiltered.) According to Dr. H-R, piaglitazone interacts with some chemicals and thises and thats in the brain and body, in a way that can have an anti-inflammatory effect and improve the performance of SSRIs.

I took the script and my skepticism home with us. Eventually I dragged myself to the pharmacy. Eventually I gave Jesse her first dose.

Within a few days we saw a difference. Her mood was remarkably improved. She was  happier, and she stopped telling me she was sad all the time. She was doing more, getting out of the house more, wanting to see friends more. We took her off the day-time clonidine and relegated it to evenings to help her sleep.

So there we were at three meds: the SSRI, the piaglitazone to improve the SSRI’s performance, the clonidine to help Jesse sleep.

4.  Risperidone (atypical antipsychotic)

Last month we saw Dr. H-R for Jesse’s regular visit. I’m trying to roll with what comes these days, and I think our re-embrace of a Ross-Greene-ish approach through the summer has helped Jesse a lot. Things were going so much better, but Jesse was still emotionally jagged and continuing to struggle every single day with tics and obsessions and all that shit. And her anxiety is what it is. But (thanks in no small part to my own medication) I’ve been in a good zone, trying to work with who she is and helping her build some new strategies.

Still, it’s a struggle.

As we were wrapping up, Dr. H-R ruminated intensely. I could practically see the racing thoughts in her head as she stared at her computer screen and her notes. “I’m just wondering if we’re doing everything we can for Jesse. Is there anything else we can do to help her?”

Dr. H-R is a pretty quirky person. Super bright, obviously, and questioning and passionate about the science. Some might say she overshares, but I appreciate her being really transparent about her thinking and the research she’s investigating, as she figures out what options are available for Jesse. Also she’s passionate about the kids. She has her own little ones, and I’ve noticed that she cares deeply about her patients.  So when she asked that question, it occurred to me that I’ve gotten entrenched recently in going with the flow, as I’ve worked to abandon a pathology-based view of who Jesse is. But there’s got to be some balance. Jesse does need more help.

I listened, and Dr. H-R suggested risperidone.

Antipsychotic.

Sorry.

We’ve known for a long time now that one possible step in the medication journey, for someone with bad tics, is an antipsychotic. We worked really hard to avoid it.

It’s such a scary word. We associate it with words like schizophrenia and psychosis; it’s as frightening to me as words like “cancer” and “Donald Trump.” I associate it with drooling and zoning out and terrible weight gain and many negatives.

Unfortunately, I don’t associate it with lots of good things, like not being completely debilitated by obsessive thoughts.

I took the script and my skepticism home. Anthony and I compared notes and feelings. We agreed that we had done everything we humanly could in terms of therapies and accommodations. I hit the pharmacy and brought the risperidone home.

Dr. H-R had suggested we give it a try and see if it helps, see if the side effects were bad. She suggested Jesse might be able to use it on an as-needed basis — not unlike ADHD meds — given the waxing-and-waning nature of tic disorders.

Jesse started taking one tiny dose every morning, half a milligram. I noticed the difference on day one and chalked it up to coincidence or placebo effects. By day three or four, I realized there was a true difference. Jesse wasn’t filled to the brim with obsessive thoughts. Her tics were almost absent — not completely gone, but not a constant presence either. She didn’t complain of any side effects, which I had explained to her so she could be aware of them. When I asked her how she felt about the new med, she answered in her plain and wise way, with a single firm nod. “I like it.”

* * * * *

It’s been almost two weeks now since we added the risperidone into Jesse’s cocktail. She is the same person, but she is also transformed. She’s less tired. She’s more alert. She wants to exercise. She wants to do things. She’s begun to wonder why she stopped writing a couple years ago. She gets along with people better.  She isn’t screaming at me all the time. It’s the kind of change that makes people say things like, “it’s a miracle!”

It makes me say, a little sadly, what took us so long?

Jesse went to a full week of all-day taekwondo camp last week. All the teachers and counselors there know her well; they’re familiar with her tics and emotional jags, with her profound negativity about herself. There was a lot of good cheer as they praised her and high-fived her out the door. They were so proud of her. I felt helpless relief. Not once in the past three years has Jesse been able to finish out a summer camp.

The last day of camp ended at a park on a bluff overlooking Lake Michigan. It was a stunning afternoon, sunny and warm. We picked up the kids with swimsuits in hand. Jesse was excited and happy. She traipsed over to the car and changed quickly; there was no whining. She raced down to the lake joyfully without waiting for Nick or me or Anthony. I can’t remember the last time I saw her with that much energy at the end of a day, at the end of a long week. I heard an unfamiliar laughter coming from the roots of her as I chased her down to the lake. I was still a hundred yards away when she threw herself happily into the water and dunked her head.

I know this sounds like one of the fake happy tales I sometimes make up: but it was real this time. I tucked my tears away and raced into the water after her, pondering the miracle of modern chemistry.

* * * * *

Ever since I gave Jesse that first tiny pill of risperidone, I’ve been suffering from an earworm. I offer my condolences if you catch it:

Psycho killer
Qu’est-ce que c’est
fu-fu-faaa fu-fu-fu-fu-faaa far better
Run run run run run run run away…

I love the French phrase in this, because it means something like “what is it that it is?” Which is kind of weird, but I think of it (rightly or wrongly) as meaning basically, “Whassup with that?” It sounds like “kess-kuh-say,” so reading it in print is like seeing a pen-stutter, or the extremely long name of a chemical compound.

Anyway, I’ve been humming the refrain a lot. It’s getting to me, but it’s still better than Disney tunes.

I realize, though I don’t like thinking of it this way, that the intrusive obsessive thoughts that have filled Jesse’s brain aren’t that far a distance from the voices that might accompany schizophrenia. And sometimes Jesse’s anxieties are so severe, and her tics are so overwhelming, that she isn’t really all that aware of what’s happening in reality around her, which isn’t that far a distance from dissociative episodes. And still, she’s a pretty awesome kid, not so frightening after all, not so lost in the jungle. She just has her own challenges to face, like the rest of us.

So I offer a drug cocktail to Jesse every day, her own personal psycho killer. I frequently remind her that she has the power and autonomy to choose not to take any or all of the pills, and we may encourage her to give up the clonidine as a sleep aid. She ultimately has to choose what feels right for her; because the correct answer to the question David Byrne posed, I think, is simple. What is it that it is? It is what it is.

I know there are people out there who will judge Anthony and me for these medication decisions, but we’re doing the best we can. Parents like us, struggling to help our kids stay healthy with their invisible disabilities, don’t deserve to be judged, by others or even by ourselves.

I don’t know if the meds will transform Jesse’s experience forever, or even for more than a few months. She’s in puberty and changing every day. I do know that, here and now, chemical intervention is a salvation, because without it Jesse would live in a personal hell. Medication adds a measure of hope that whatever is left of her childhood will be filled with more laughter than misery, more connection that alienation, more pith than emptiness.

I will accept whatever judgments are thrown at me, with pleasure, for that. And I know I’m doing okay because, just today, a little girl told her mom she wants to come here to my house for a playdate with Jesse and Nick. She said I’m the third best mom she knows, after her own mom and aunt.

If I can be the third best mom in the world, I’m doing okay.

where to find all the empathy

Let me tell you two stories.

* * * * *

Jesse has a friend named Ben. They don’t really have a whole lot in common, except for both being charming, quirky, and likeable. They like different books and games; they do different after-school activities. But they seem to be genuinely fond of each other.

Ben happens to be on the autism spectrum with some anxiety and maybe ADHD thrown in for good measure. Jesse happens to be on the anxiety spectrum, with OCD and Tourettes thrown in for good measure. Both of these kids have labels, and also some social cuing problems, emotional unevenness, issues with perseverating, and internal dialogues that can be hard for others to follow. Both can have trouble connecting socially at times. None of these challenges and labels are a barrier to their friendship.

We happened to be at a local pool one day with a handful of friends, including Ben’s family.  Jesse and Ben wandered off to the water slides together. At some point we observed them at the top of the stairs to the slides, having a conversation we couldn’t hear. Jesse was gesticulating with her hands, leaning in to Ben and speaking intensely. He looked at her seriously. A moment later, they disappeared from view — which means down the slide they went.

That evening, I asked Jesse about what I had observed. This is what she told me, in a nutshell:

A potential crisis developed as the two stood at the bottom of the stairs to the slides, waiting for the possibility of a two-person inner tube. These are in extremely short supply at our watering hole. Two kids came off a slide in a rare two-seater. Jesse and Ben asked if they could have it now. The kids said no. Ben told them in no uncertain terms that it wasn’t fair, and he went on about it. Ben gets stuck sometimes on fairness issues. He knows what the rules are and he thinks everyone should follow them, just like he tries to do.

Oh boy, has Jesse been there. She watched Ben arguing at the kids, and in her heart she agreed with him. She also observed the other kids staring at Ben without speaking, in a way that was unkind. But she didn’t join in the argument. Instead, she got close to Ben and spoke quietly to him. We can go up with just one-person tubes, and then you and I can race down both slides together at the same time. It’ll still be fun.

Ben decided this was a good idea, and they headed up the stairs together. But they were in different spots in the lines as they waited their turns. Ben became very concerned about it, and was headed down the road to being upset. Another glitch in the plan. How would they race if they had to go down the slides at different times?? Oh boy, has Jesse been in that emotional spot herself. She offered Ben a solution: if Jesse got to her turn in line first, she would just let kids pass her until Ben caught up. And he could do the same thing if he got there first. She explained it a couple times until he got it. Problem solved. Fun racing ensued.

As Jesse shared this story with me, I marveled with pride. Jesse had just given me a textbook lesson in empathy. She accepted Ben as he is. She saw his side of things and responded to him from a place of respect. She tried to help him solve the problems that were eating at him, without a single didactic interlude. She didn’t even waste her energy on the kids who were hogging the double tube. She knew instinctively there was nothing to be done there. She paid attention to her friend instead. There were no labels between them – just friendship and open hearts.

* * * * *

Our local state university outlet – University of Wisconsin Milwaukee or UWM – runs a summer program for kids and teens. One of their offerings this year was a course on painting with acrylics, two hours a day for two weeks. Jesse has been busy exploring painting this past year, so she was enthusiastic about the class. On the other hand, we’ve never done any UWM summer classes before, so she was really stressed out about it… which means her obsessions and tics would flare… which created even more stress in her mind as she anticipated the flare… and so on in a vicious cycle. She was pretty much a train wreck on the first day of class, but she hung in there and kept going back.

By the second week of the class, Jesse was clearly getting even more unhinged than usual. She eventually shared with me a bit about her experience, and a sadness creeped over her.

She had made so many screeching sounds on the first day, she told me, that people didn’t want to be near her. Everyone else seemed to know each other, but Jesse had trouble connecting with anyone because of her tics.

I asked if Jesse had tried to explain her behaviors.  “Did you tell them about any of your mental health disabilities?”

“No,” Jesse answered firmly. “I didn’t want to.”

One girl in particular really struggled with Jesse. One day this girl was getting upset about her painting — a feeling Jesse is familiar with — so Jesse tried to offer her praise and encouragement. The girl responded sharply, “Stay away from me.”

Jesse snuck a starburst onto her chair one day, as a way to sort of say sorry. The girl snapped when she saw it. “Who put this here??”

Jesse said she did, to which the girl replied gruffly, “I don’t want it!”

Jesse was sitting in my lap as she shared these anecdotes in a dry, sad voice. I buried my face in her neck and staunched my tears. I didn’t know what to say.

“I’m sorry.” It was all I could muster.

“It’s okay,” answered Jesse. “I deserved it.”

There was one girl who actually was a little nice to Jesse. One day Jesse asked her how old she is.

“I’m thirteen,” the young lady responded. “How old are you?”

“I’m twelve,” Jesse replied. She noticed two girls standing nearby listening in. The girls stared at Jesse; they looked meaningfully at each other; they looked meaningfully back at Jesse.

Jesse – being the child of my heart – took that nasty shit on. “Why did you stare at each other like that and then at me? You don’t believe I’m twelve? I am twelve, I’m just really small.”

“No, it’s not that,” one of them answered with a bit of a sneer. “It’s just, if you’re twelve, why do you make noise like that?”

My heart squeezed in pain as Jesse shared this little bit of weird nastiness with me. I hugged her tight and mumbled into her hair. “What did you say?”

Jesse pulled back and looked at me. She shrugged. “I thought yeah, they’re right.”

Later in the evening, after my hurting for my baby girl had subsided, I marveled with sadness. Jesse had given me another textbook lesson in empathy, only it was from the other side. She accepted these mean girls’ reactions to her, even as they refused to accept her in return, refused to make any real effort to comprehend her. She understood their point of view, even though she’s never shared it. She didn’t judge them. She didn’t try to make them see her side. She knew instinctively there was nothing to be done there.

* * * * *

 

 

Most kids with behavioral and emotional challenges learn early on that they need to do a better job of understanding how their behaviors impact others. It’s pounded into their heads with emotional jackhammers, by parents, therapists, doctors, counselors, teachers, school administrators, all the adults all the time.

So who’s teaching those lessons to the neurotypical kids? Who says they’re not the broken ones? Where is the mutual empathy and acceptance that kids like Jesse and Ben deserve?

 

Cheers, from my anti-depressant to yours

It’s been just about a month since I started taking an anti-depressant. My drug of choice is a selective serotonin reuptake inhibitor (SSRI) called citalopram, popularly known as Celexa.

I need exogenous chemical intervention because I’ve been trying to fight off depression and anxiety for the past couple years, and I recently hit the bottom of the dark, gloomy pit.

Actually, if you’ve been following my blog, you might have realized long before me that I’ve been hitting the bottom over and over again. I can’t even give you links to particular blog posts that illustrate this problem. There are too many. Just go scroll if you must.

Actually, if you’re my husband, you’re apparently of the view that I’ve been hitting the bottom like a panicked fly smacking a clean window for the past decade and a half. Anthony started a sentence a couple weeks ago with, “Don’t take this the wrong way, but…” and I knew nothing good would follow. He finished the thought by remarking that I’ve been depressed, on and off, pretty much since my dad died in 2001.

* * * * *

So you might remember that when I popped my first pill, butterflies flew out of my ass.  The next pill, it was unicorns out my nose. Day three, a rainbow entered my left ear and exited my right, leaving a trail of glitter behind.

But look, never mind the butterflies and unicorns. This is kind of hard to talk about, kind of hard to admit that I’ve had a serotonin deficit for so long that I didn’t even notice it, kind of a bitter pill to admit that I’ve been harming myself and my family through my untreated long-term clinical depression.

On the other hand, it’s kind of easy to admit that the drug is working.  It’s working so well that I’m almost giddy. Sometimes I just croon at Anthony, “serotooooooonin.” Sometimes I even smile and hug him for no reason, and I feel happy and peaceful.

It’s weird and unfamiliar.

Sometimes I walk out to Anthony’s car with him as he’s leaving in the morning. I might even be cheerful and upbeat, which is all kinds of messed up that early in the morning. He might roll down his driver window and I might lean in for a kiss.

The words inevitably come out of me with a laugh. “CITALOPRAM-A-WHAMMA!!”

* * * * *

I know the antidepressant is working because I’ve gotten more done in the last month than I did for the two years that preceded it. I am so functional and productive that my body can hardly stand it. I’m falling apart at the seams physically.

I do laundry.

I clean toilets and mop floors.

I wash dishes from breakfast before I eat dinner. As Anthony pointed out, this is not only pleasant, but also hygienic.

I don’t spend much time anymore sitting on the sofa pondering all the things I have to do and don’t feel like doing. I actually get up and  do them.

In the past 30 days, I’ve thrown three parties — one for a friend, one for my kid, and one for Anthony’s graduating seniors. I believe I was pleasant at all of them.

I did our taxes on time. (but only barely)

I don’t yell at the kids very much. Instead, I problem solve. Could I be more annoying?

There’s an intangible change in how my mind is working. I’m having real trouble finding words to describe it. My personality hasn’t changed: I’m still really grumpy and I still laugh at poop jokes. But before I started taking this daily pill, I was always on the brink of collapsing into morose blankness, for any reason or none at all. I stopped being able to even fake it.

That’s changed. I feel like there’s this space in my brain that used to fill up with my black moods, a space that now fills up with something more capable and resilient — more like who I used to be, back when I was an active and lively person. When Jesse’s in crisis, I find that I’m more able to identify her needs and respond with love and kindness, rather than despair and anger. When things don’t go the way I want, I don’t give up as readily. I can go with the flow a little better. Well — a lot better.

* * * * *

I know  the antidepressant is working because I wanted to do a bunch of woodworking chores — refinish a couple tables, craft some built-in drawers, finish some wood trim and such — but Anthony wanted desperately to build a retaining wall, and he won and I’m not angry or depressed about it.  Instead, I chipped right in because the faster we get this horrifying task done the faster I can get back to what I want to do.

That is just disgustingly well-adjusted.

Anthony won by going outside one day and digging a trench, right where he wanted the wall to go. But then, because he’s kind of lame (I can say that with grumpy affection and pure love now, instead of with bitter bile and disappointment), I had to lead the effort to figure out all the details — wall height, how much and what sorts of materials we needed, where to buy them cheapest, and how to get them all delivered.

So I did all that. I just did it, because there was this trench in our backyard and Anthony wasn’t going to make the next move.

I also figured out how to get the internet company out to lay a new cable line right away, after Anthony severed our existing line while digging the trench. When it happened, he looked up at me with his sweet earnest eyes and announced simply, “Look Carla, I cut a cable.”

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Look how hard he must have worked to cut that cable in  half with a shovel. Sigh.

But I didn’t scream or get super angry.  Helium-filled pink puffy hearts came out of my butt and floated me peacefully into the kitchen, where I tracked down a phone number and called the company and waited patiently through fifty-nine selection options and eventually had a new internet line installed within three hours.

Citalopram-a-WHAMMA!

And then we persistently and ploddingly built a wall. We said we were gonna build a wall, and we built a wall. It’s the most fantastic wall you’ve ever seen, it’s a big, beautiful wall, made of the best materials. I don’t think there’s ever been a wall this amazing. All the neighbors came by and told me, “that’s the most beautiful wall we’ve ever seen.” All of them. Trust me, you’ve never seen a better wall.

Here, let me photo-journal-ize the building of the wall for you. You just keep chanting “build. the. wall! build. the. wall!” as you scroll through these pictures.

Let’s start with Anthony happily hugging a bag of gravel, because America first and making Anthony great again and he’s just happy to have a job.

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Here’s the wall starting to go in:

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Anthony said I had to lay the base course because I’m good at it. So I did what he asked, with good cheer. Look at all the levels I had to use. I had to lay each base stone so that it was level side-to-side and front-to-back, and also level with all the other stones in the row. This wall is about 35 feet long, each stone is 11.5 inches long, and it took me between 10 and 15 minutes to install each base stone. You do the math on how long it took me. Every third stone or so was really tough, and I would get really frustrated. So I would sit back and take a few deep breaths, or walk around the yard a bit, and then get back to work.

Citalopram-a-whamma!

Perfection: look at that bubble.

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And here are some progressive shots of the wall going up. You see Anthony backfilling with gravel:

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And here’s the nearly-completed wall:IMG_3654

Frankly, despite its apparent hugeness, the wall looks small when you compare it to the house and yard:IMG_3656

Still, it should be big enough to keep out the riff-raff aliens, all those vicious rabbits and  chipmunks and robins that are constantly trying to raid things around my house.

I was so excited to build this wall, because the system we used only takes thoughtful effort on the base course. After that it’s pretty much just like stacking legos: 350-odd super heavy legos. It’s hard labor carrying those stones around, and backfilling with fill dirt, and dragging around 50-pound bags of gravel.

Did I fail to mention the fill dirt? I ordered 12 cubic yards — which, it turns out, might have been a bit too much, like maybe by a factor of two. And there’s nowhere to dump it except on the driveway.

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We moved about half of that into the space behind the new wall, one wheelbarrow at a time.

As for the rest, Anthony came up with a plan: let’s build more retaining walls now instead of waiting a while like we had originally planned!

Yay.

It was clearly important to him, so I set aside my woodworking dreams again, without a bitter heart. (Thanks, citalopram!)

We laid out lines for two new trenches. Anthony already has begun to dig.

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I measured and ordered more stone and gravel and leveling  sand. I’m so thrilled that soon I will be laying the base stones for a 50-foot retaining wall, and then another 30 to 40 foot wall. Look at these delicious materials:

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I can’t wait to break my back for the next  two to four weeks building more walls, even more fantastic and beautiful than the first.

I walked outside this morning to take these pictures to share with you, and for a brief moment I quailed. It’s so much work, I thought. Uugh.

But then I looked over to the other side of our yard and noticed how lovely the faux-wilderness garden looks this spring. La-lala-lala. The bleeding hearts and hellebores are spectacular, thanks to global warming, and everything is vibrant and lively, a perfect mash-up of yellow and green and purple and red. It distracted me from the funk that loomed, and I was happy to wander around pulling a few weeds and snapping shots of my lovely baby plants.

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Thanks to citalopram, Anthony and I are actually going to get those walls built, whether or not the Mexicans pay for them. I’ll just keep going and going and going, piling stone on stone and shoveling gravel and dirt to my heart’s content, building slowly and inexorably without ever giving up. I’ll even remember to hydrate, because it’s important that I take care of myself in all these labors.

There’s a metaphor to be had in there. You figure it out.

mommy needs meds too

Last week I picked Jesse up from school, as usual.

As usual, she was emotional wreckage. That’s just how it goes for Jesse these days. She works as hard as she possibly can all day long to control urges and impulses, and to tuck away all those intrusive thoughts that get in the way of learning and fun, and to dial back her emotional outbursts. By 3:00 p.m., she’s done. Stick a fork in her.

So last week, yeah, as usual, she was whiny and unhappy. As usual, she unraveled into her miserable self-reporting cadence. I did not know (until I knew) that constant negative self-reporting is a form of “checking” behavior associated with OCD. Almost every weekday, Jesse starts her after-school conversation with me by generating a microscopic run down of all the shitty things she did that day.

If I believed her self-reporting and self-assessment, I would conclude that she’s like the girl from The Exorcist, head-spinning, vomiting, and demon-talking her way through each school day, with tiny flames shooting out her butt.  There’s probably a little of that, but not as much as Jesse would have me believe.

I’ve tried and tried to get Jesse to tell me about good things first, but it just doesn’t roll that way. She can’t stop it yet. She can’t see herself as something good.  Yet.

I hate it so much. I hate her negative self-reporting and her self-loathing and the miserable exhaustion in her face at 3:00 on every school day. It breaks my heart a little every time, because I wish there was some way, finally and finally and finally, to break through.

But also, it just wears on me. I get bleak and blank, and on many days I find myself unresponsive. I really don’t know what to do. Usually we just drive grimly over to the elementary school to pick up Nick. Sometimes we natter, sometimes we yell, and sometimes I make Jesse get out of the car and walk because she’s kicking the back of my seat so hard.

So anyway, last week, as usual, I walked into the school house and found my miserable child. This time she was in the hallway, sitting on the floor next to her locker, mewling about I-don’t-know-what. A school administrator was hanging out with her, in a really good-natured way. But Jesse wasn’t having it. She looked up at me from the floor and almost yelled at me (as usual). But for some reason she went a step further on this particular day. She stuck the emotional knife between my ribs. “This is just the way I feel at the end of the day, mom, because I’m tired, okay?? This is how I am after school because I’ve worked hard all day! And DON’T DO THAT THING AND GET ALL DEPRESSED LIKE YOU DO EVERY DAY.”

Huh.

* * * * *

The timing couldn’t have been more uncanny. I stared down at her and nodded. I chatted a bit with the administrator. We picked up the pieces of Jesse that we could reach and pushed her back together, and got her stuff in her backpack, and then she and I walked out together.

I put my arm around her shoulders and stuck in my own knife. You’re right, I told her. I’ve been depressed. I do let you down every day when I pick you up. I need help.

In fact, I had just been to the doctor that very morning and gotten a prescription for an antidepressant. So I told Jesse about that and assured her I would start taking it, and maybe I’d finally be able to get past the gloom, get some energy back, be a fun mom again. Be the patient, supportive mom Jesse needs, which I really haven’t been lately.

“Noooo Mom,” Jesse countered. “You have been patient! You’re always there when I need you. You never let me down!”

Nope. She didn’t say that.

What actually happened is this: she nodded with a look on her face that was somewhere in the zone between “about time” and “good luck.”

I told Nick too, that evening. Mommy’s going to take some medicine, the way Jesse does, so that I can be less moody, and maybe I’ll have more energy to do things like fold your laundry and clean the house and exercise and play, because my mood has been really messed up lately.

Nick didn’t protest either.

* * * * *

I’ve never taken an antidepressant before.  I’m scared, but I know it’s the right thing to do.  All the signs are there.

I’ve been going through the motions for a long time now. I’m good at it, for sure — I do volunteer advocacy and school volunteering, I take my kids here and there, I laugh and make jokes, I work on positive self-talk, la la la la. But I can’t maintain it except in short stretches. I rarely feel deep joy anymore, that feeling that blossoms in your bones and gut for no particular reason. Everything’s flat and mushy, like a wet fog.  I rarely even feel especially sad. I don’t have tears except when I’m utterly full of despair. I feel occasional moments of pride and hope for my kids, but I can’t sustain it. My self-care has suffered. I can barely motivate myself to get exercise, when it used to be a daily refuge. I rarely look in the mirror. I forget to comb my hair.  I drink too much.

I don’t think I’m very funny anymore either.

The thing is, I have no excuses. I have nothing but blessings around me. I have a financially secure life. My family is in pretty good physical health. I’m supported by a man who apparently has an unfathomable love for me. Since I’ve been in this funk, he’s pretty much taken over the laundry and housekeeping. I couldn’t be more spoiled. I have two beautiful children who, despite their issues, are surviving and thriving. I have friends and community. I even have self-awareness and intelligence.

It’s an easy out to say that having a kid with unique mental health challenges makes for extra stress and can lead to depression and emotional exhaustion. But I can’t put this one on Jesse. The truth is, everything would be easier for her — and therefore for me — if I wasn’t such a Debbie Downer these days. I am still the parent, and she is still the child, for many years to come. She needs me well, and it’s my job to make me well.

And right now, the truth is that I need a jump start to get there. I need some real pharmaceutical help to get me over the hump so that I can rediscover some of the fundamental joy and humor in life that used to sustain me.

I took my first pill last night and sat in the living room by myself. Anthony and the kids had fallen asleep. I waited for something magical to happen, and suddenly it did! I looked out the window and saw the moon, shining silver down upon me like a messenger. An owl hooted in the back yard and I ran outside in my bare feet, the wet grass clinging to my toes. I looked up at the moon and stars, and a feeling welled up in my heart that hasn’t been there for months, and I raised my arms in a primal dance as I turned in a circle with my eyes closed, feeling the mix of winter chill and warm air that defines a Wisconsin spring. I howled like a coyote and reconnected with Mother Earth, and I knew all would be well.

* * * * *

Ya think?

No. I sat on the dirty living room sofa and mostly I felt kind of extra gassy, but that might have been from the gelato.

Still, who knows? Give me four to six weeks, and I’ll let you know how I’m doing.

 

 

money well spent

My son Nick, a first grader, looked over my shoulder as I thumbed through Facebook on a recent snow day. He saw a picture of a classmate standing bundled in the snow. He knew her name, so I asked him about her. I’ll call her Jane.

I like to ask my kids about their classmates. I like to nose around in their relationships at school, to get a feel for how they’re interacting with their peers and  what sorts of issues and non-issues are floating around. I’m a nosy mom.

“Do you like Jane?”

A smile hit Nick’s face like sunshine as he answered promptly and cheerfully. “Yeah!”

“Do you play together sometimes?”

“Kind of.”

“Do you ever play with her on the playground?”

“Kind of… she has a helper.”

I know Jane’s a child with a disability or two, but I don’t really know how her abilities and behaviors are affected.

“Do you ever talk with her?”

Nick unexpectedly made a sad face. He shook his head no, and he wouldn’t answer me aloud.

“What’s wrong, Nick?”

He shrugged.

“Is she non-verbal?”

He still just looked at me.

“Does Jane talk?”

With that question, it seemed he decided I was going to get it, so he finally answered. “Not really. She makes some noises and does this sometimes.” He flapped his hands a little.

“Does that bother you?”

“Of course not!”

He looked at me like I was daft to ask.

“Do you like having her in your class?”

“Yeah,” he answered without hesitation, and then he explained to me a bit about how Jane has a helper with her in class so she can do things, and sometimes she does hand-over-hand writing, just like he had to do through much of kindergarten. He also pointedly informed me, in a sort of remonstration, that Jane is not the only child who needs extra help in the classroom. He mentioned a couple kids with behavior issues, chattered about special ways teachers and aides work with them, and didactically made sure I wasn’t singling Jane out as being especially challenged.

* * * * *

There was a time not so long ago that I would have said I was proud of Nick for his attitude toward Jane, but I’ve come to realize that pride is a patronizing, almost offensive, attitude in this context. Why should I be proud of my child for looking at a human being with a disability and seeing… a human being?

We sat quietly for a moment, and I decided to take it up a notch.

“Nick, do you know that there was a time not so long ago that Jane probably wouldn’t have been allowed to be in the same class as you?”

His mouth fell open in an exaggerated expression of shock, and he yelled in my face, “WHY?”

I winced. Nick has a decibel disability. He was apparently born without volume control.

“Because she’s different. Grown ups would have said she doesn’t belong in the same class as kids like you.”

“WHAAAT?”

“People with disabilities would have been put in separate classrooms, or even in totally separate schools. In some schools they wouldn’t have even been allowed to come in the same school doors as kids like you, so you wouldn’t have even known they were there.”

Nick was disgusted. He couldn’t believe a world like that could exist.

“People would have said that if someone needs a helper in the classroom, she shouldn’t be there.”

“That’s so wrong!”

“Do you think your class would be better without Jane there?”

“NO!!”

By now my daughter Jesse, a fifth grader, had joined our conversation. Jesse copes with an anxiety disorder and OCD and Tourette’s. Jesse is sometimes beset by coprolalia, one of the most offensive manifestations of Tourette’s.  Jesse has a long history of therapy and treatment; she takes meds for the anxiety and tics; and she has an Individual Education Plan at school that ensures she gets much-needed special ed support and accommodations. As a result, she’s doing really well, and most days you wouldn’t know she’s anything but neurotypical.

I went in for the kill.

“There was a time when kids like Jesse wouldn’t have been allowed to be in a regular classroom.”

The kids were silent and shocked. It seemed like it was a lot to take in.

I gave it a name. “But some of our schools have changed a lot. We call it inclusion. An inclusive classroom, where all different kinds of kids can learn and play together. Do you like having inclusive classrooms?”

You know what the answer was, my dear reader.

* * * * *

Don’t think for a minute that I’m suggesting my incredible parenting and saintly values are turning my kids into inclusion champions in the schoolyard. I’m not even remotely that good. Frankly, I didn’t even have any idea what the concept of “inclusion” meant when Jesse started tormenting her teachers in preschool. I spent most of those early years apologizing and ducking my head in shame. And yet here was my young son now, instinctively embracing the heart of what inclusion is all about.

I didn’t teach him that. Rather, inclusion at school has created an environment where my children don’t really comprehend its absence. Inclusion at school has taught me that my own children are welcome, whatever challenges they may face in the years to come; and thus school inclusion has taught me to believe my own disabled child deserves to be included. Inclusion has moved me from a place of patronizing compassion and sympathy for others, and guilty shame for myself, to a place of co-equal acceptance and mutual empathy. Inclusion has taught my children and me that different is same, and same is different.

Equal.

Inclusion doesn’t happen because one day people wake up and say, “hey, let’s include everyone, no matter what their abilities and needs are! Yay!! Inclusion!!”

Successful inclusion takes effort and commitment and advocacy and good laws, of course; and it takes creative, educated thinking to identify and develop accommodations, modifications, and therapeutic tools. But also in the crassest sense it takes money, which most families raising children with disabilities don’t have enough of. We rely on private health insurance to cover the costs of treating our children’s unique disabilities and providing interventions and therapies to improve the quality of their lives; and more of us have been able to do that now, thanks to the ACA. When that’s not enough, we turn to public resources like Medicaid. We look for help in our public school systems too, through special education programs and occupational therapists and speech therapists and school counselors and whatever else we can get our hands on. Those resources are funded through school budgets but also in part through Medicaid.

Is it taxpayer money well-spent? Of course it is (even leaving aside social justice issues and basic human decency), and not just for the individuals who rely directly on these resources. Anyone who thinks Jane is the only one benefiting from inclusion — including the therapies and modifications and aides that make it possible — is living in a narrow, dark tube. Jane’s inclusion benefits all the children and families around her just as much as it benefits her, short term and long term. 

Nick isn’t having a better experience at school because he’s learning to “tolerate” Jane. He’s having a better experience because Jane, his peer, is a unique, fully formed human being in his classroom. He’s learning broader skill sets in human interaction, thanks to diversity. How will he treat kids who are mean or kind? Kids who are hostile or bullied? Kids who are verbal and non-verbal? Kids who learn quick and learn slow? Kids who can sit still and can’t? Kids from different ethnic and cultural backgrounds? Kids who have visible disabilities and invisible disabilities? The last is just one more in a long list of questions we ought to be confronting as we grow up.

Someday, as an adult, Nick will enter the workforce. He may have a boss, an employee, a co-worker, or a client with a disability. How will he handle it? Before inclusion, he likely would have been facing that question for the first time as an adult, with a jarful of ignorance, bias, and misinformation.  With school inclusion, right from his earliest memories, Nick will have experiences that inform his thinking and decision-making, that will help him make intuitively respectful, wise choices in how he engages with people.

I can’t readily put a price tag on that. But I know the number would be high, really high.

* * * * *

It’s easy to wring hands about the sometimes astronomical dollar costs of providing therapies and services for people with disabilities, at taxpayer expense. I haven’t dug too deeply into the justifications for moving to Medicaid per capita or block grants, but I suspect that this is a big part of the problem: some people just don’t think it’s right to put too much tax money into one person. They’d like to cap it.

For my part, I find it easier to wring my taxpayer hands about the costs of not providing needed services. There are plenty of resources out there for you to find, if you want to, about how much more it costs on the fiscal front for our governments not to include, empower, and enable people with disabilities. And no one can really quantify the moral cost to a society of having people with disabilities living in dehumanizing institutions or abandoned to the streets, unable to find employment, unable to live independent and healthy lives because we’ve failed to provide them basic supporting resources. I’m with Nick in feeling a sense of disgust that this is even up for debate.

So I’m trying not to be swallowed by despair, as we watch American leaders start to tear down Medicaid and the ACA, which have been instrumental in supporting people with disabilities as they strive to live fully enabled, human lives.  I’m trying to stay focused on the day-to-day, right here in my tiny world in Wisconsin. I’m thankful that I live in a place where regular kids like Jane and Nick can be in a regular school together. If Jane requires a little or even a lot more assistance to make that possible, so be it. Someday it might be Nick who needs an extra hand. Allocating money to need doesn’t mean Jane is unfairly getting too much.

Allocating money to need makes equal inclusion possible, and therefore it is exactly what fairness looks like. It makes Jane and Nick equal children in our society, just as they are equal humans in our species. And I’ll always take equal over a tax break.