Why I don’t homeschool (episode 4972)

I dragged myself out of bed this morning, my nose still congested five days into a cold that’s been just bad enough to make me kind of miserable and deny me sleep,  but not bad enough to take me down into bed-ridden incompetence. In some ways that’s the worst kind of cold, because I don’t have a legitimate excuse for sitting around being lazy. I have to make up fake excuses instead. Excuse me, alternative excuses.

I sat up and tried to breathe through my clogged sinuses. I stretched my feet before I stood, so that the pain from my plantar fascitis (plantar fascist is more like it) wouldn’t make me fall over. I hobbled over to the bathroom and got through my morning routine. (Not much to it really. Eye drops. Pee. Brush teeth. Avoid looking in mirror. Dress in something not stained or smelly). I hobbled downstairs and got to work on breakfast and school lunches, alongside Anthony.

Some days, right at this point, when I’m feeling tired of this never-ending routine, when I can’t bear the thought of packing another lunch, when I’ve been sick and I can barely get my eyelids to lift off my eyeballs… I wonder what it would be like to homeschool. I wouldn’t have to make school lunches. I wouldn’t have to rush about on someone else’s schedule. I wouldn’t have to worry about making sure the kids take the right books, papers, and equipment with them to cover the next seven hours without me. I wouldn’t have to worry about whether the curriculum they’re stuck in is appropriate for their developmental levels and current interests.

I could sleep in. Sleeping in is a significant factor favoring homeschooling.

Also if we home schooled, we could eat when we want, learn when we want, and go outside when we want. We could be doing a lot of very cool stuff.

But I know there are significant impediments to home schooling, mostly involving my personality and all the questions. I would have to decide once and for all (unlike in this written piece so far) whether homeschooling is one word or two. If it’s one word, does that make me more Germanic? Because I don’t think I’m Germanic at all, but in that language they like to string lots of words together to make new words, right? If I homeschool instead of home school, do I have to teach my kids German?

Does it still count as home schooling if I outsource 80% of the actual education to others? Why isn’t that called “private tutoring”? Is it still homeschooling if I have the kids do all their learning through on-line courses and materials? Why is that home schooling and not computer schooling or on-line schooling? Do I have to make flash cards and maintain an apocalyptic supply of glue sticks? Can I get away with unschooling and just do whatever the *#)% I want on any given day? Will my children still have good hygiene skills if someone doesn’t tell them twenty times a day to take a squirt of hand sanitizer before doing the next activity? Does digging for worms and making a garden count as physical education? Does trying to figure out the vector of falling leaves and catch them before they hit the ground count as science? Does using the garden hose on the kids count as giving them a bath?

Hm.

Gosh it’s been a while since this happened, but… I can’t remember what I was going to tell you about. I’m pretty sure this isn’t it. Hold on a second while I rummage.

* * * * *

AH! That took a few minutes. Here we go:

I woke up this morning and made it downstairs. (Right, that’s where I got distracted.) The kids came down for breakfast and we had a pretty typical morning conversation as we ate. Nick was joyfully shouting completely random numbers for no apparent reason, while Jesse hung her head in moping annoyance. “Forty one!” “Nine hundred fifty two!” As I headed to the basement to find a juice box for each kid’s lunch, I yelled  back at Nick, “Every time you say a number, I’ll say one back!”

So we did that for a couple iterations with integers, and then when it was my turn again I shouted “PI!”

Anthony and I cheerfully explained pi and why it’s a unique and important and cool number, but there was zero interest in the seven- and eleven-year-old set in our household.

Nick said another number. I answered, “i!” Anthony explained about this important imaginary number.

Nothing.

We went again. This time I said “C, from C equals M C squared! Speed of light!”

Huh?

We had a curiosity-filled conversation about whether it’s in fact true that the speed of light is as fast as anything  can go, and what light-years mean, and how the speed of light is different from the speed of sound, and how it’s all waves. Or particles. Or waves. Or something else.

We stuck with waves. Anthony remarked on how cool it is that sound comes at us in WAVES, and then I tried to explain how a sonic boom happens when something approaches and exceeds the speed of sound. I used the fingers of one hand to show how the waves start to smoosh up closer and closer together, and my other hand was the jet getting faster and faster and causing the waves to smoosh even tighter until they were all smooshed up together, and then BOOM!

It’s kind of hard to explain actually, isn’t it. Oh well. If I were a home schooling mom, I thought, we could spend the next week studying light and sound, and how cool would that be. I’d actually learn something.

I should have let my mind dwell on that, but instead I was mindful, I did the mindful thing, I mindfully returned the present and mindfully continued to interact in the present moment with my mindful family. This is when I made a crucial mistake.

In a sorry attempt to make a joke, I said, if Nick ran faster than the speed of sound, it would be more like a sonic shriek than a boom.

Nick thought that was funny. I suggested he give it a try—

Wait, what?

What did I say?

Why? Why would I do that? WHY???

As the words came out of me, like a tic-ish blurt over which I have no control, Jesse hung her head so low her nose almost touched her plate, and she almost imperceptibly shook her head in a tooth-gritting silent scream. Anthony muttered, “please don’t. No.”

Nick got up from the table and skipped into the living room. Everything was still. Three people in the kitchen breathed a sigh of relief.

A short moment later, Nick started screaming at maximum volume as he raced around the house.

It turns out that Nick can make a sonic shriek even without achieving the speed of sound.

 

And this is why, when I dropped Nick off at school earlier than usual today, the thought of home schooling was far from my mind. Instead, I was filled with even more gratitude than usual for the extraordinary teachers who take my children, day after day, and fill their academic cups. Without me there.

nuclear option

One of the great side effects of having a child in therapy for many years has been my blossoming understanding of some of my own issues.

I’ve learned a bit about OCD and finally can acknowledge that, given a chance, most psychologists would diagnose me.

I have a lot of counting behaviors. I count random stuff aimlessly all the time, and I look for certain number sets. Just for fun, I used to tell myself, but I’m recognizing it as a function of OCD now. I make lists about anything and everything, and then I rewrite the lists, and I number the lists, and then I reorder them, and count again to make sure I haven’t dropped items, and so on. I used to lie awake at night, obsessively counting how many years of my life are likely to remain, as compared to the years that  have passed, and calculating how many days of the remainder of my life I would actually spend with my parents (pretty depressing calculation when you live thousands of miles away, really). I’ve tried to cut that out, but recently I realized I’ve just replaced it with counting days and hours. How many hours until I have to pick up the kids; how many days left in the week; how many weeks left in the school year. I can spend a whole day checking in every 15 minutes or so on how much time I have left before I have to go get Jesse from school.  It can be debilitating. I’ve set five weekday alarms on my phone for place markers through the day, as an aid in getting me to stop checking the clock. They help a little, but only a little. I spend my time counting the minutes until the alarm will go off.

I become obsessed with tasks. Badly, down to tiny details. Anthony is kind and says it’s just how I do things. I read and plan and read and plan before I start home improvement projects. I buy too many books, I make the inevitable lists and develop pages and pages of calculations about costs and materials and time and so on. Yes, some of this makes sense, but I inevitably go too far. It’s overkill — it weighs me down and slows me down, without adding value at some point.

I’m a disordered person, but in certain limited contexts I become extremely and unreasonably obsessed with having things a particular way, and I’m hypercritical of jobs that I do. The tile that didn’t go in just exactly right, the wood finish that isn’t perfect, the seam that has a bump in a stitch, the sentence that isn’t quite right. It drives me crazy.

And worst and most important of all, I apply an extreme moral code to myself, one that I can’t meet.  My behavior is never good enough, my choices never mature enough, my communications never thoughtful enough, my actions never responsible  enough, my heart never generous enough. And as a parent? My god. I’m a walking fail. I should have the word tattooed on my forehead. Everything is my fault.

It turns out I picked a couple perfect professional venues for expressing these qualities. As a classical musician, I walked into a world that’s well suited to someone who counts obsessively, focuses on minute details, and is hypercritical of herself. The harsh feedback from teachers was never as harsh as my own inner voice, so I could take it. As a billing attorney, I stepped into a world where I could break down my hours into 3-minute segments (.05 of an hour) and count my days out beautifully. And also there was the constant criticism, the threat of malpractice and incompetence and failure leering over my shoulder, perfectly in tune with my own self-loathing.

* * * * *

But there’s another aspect  to my self loathing, which I’ve refused to acknowledge openly until now. I think I’ve been the subject of abusive gas lighting my whole life.

I know, I know, I make fun of pop culture phrases like gas lighting, and they’re emotionally monosyllabic. But it happens to be a perfect fit here. I have a brother, three years older than me, who’s spent my entire life putting me down. Hard as it is to admit it, I’ve allowed it to shape my self image.

When I was little, he told me I was a cry baby and a big baby. But it wasn’t really as normal as it sounds, I realize now. As little kids he would punch me so hard it left bruises, and then mock me when I cried about the pain. He never apologized. Instead, even into adulthood, he would complain that I bit him so hard I made him bleed and show people some alleged scar. He didn’t mention the way he beat me up. I was the bad one.

As the years progressed, the words and accusations changed, though the physical abuse attending the words didn’t. You’re stuck up. You think you’re better than everyone. Shut up, bitch. Punches and shoving were inevitable, and bruises. He never apologized.

You’re a tattle.

Only I wasn’t. I didn’t show the bruises to my parents. I was ashamed of them. I kind of felt like they were my fault. If I were tougher, and not a cry baby, and if I could gain a little on the 50 pounds he had on me (probably closer to 90 by the time we were in high school), I could stand up for myself better. If I weren’t so stuck up he wouldn’t get so mad. Was I stuck up? I wasn’t sure. I was willing to ask myself that question. Why else would my brother beat up on me so much and put me down so much and pick fights with me so much?

He punched holes in the walls of our house, screamed at all of us, intimidated everyone. I helped mom patch the holes. So I was a kiss ass. I thought I was helping mom through a really, really hard time because her son had screamed at her and called her names and wrecked the house. But the gas lighting, combined with my own OCD, worked. Was I a kiss-ass because I helped mom? I couldn’t help but wonder about it. It never occurred to me that this idea was pure nonsense.

By high school I was an A student. I didn’t especially like being an A student. I didn’t really tell anyone. There was a voice in my head, in my real world, and in the bruises on my arms. My brother never congratulated me about my academic successes. He put me down because of them. You’re a stuck up bitch, you think you’re better than everyone because of  your grades. Did I think that? I couldn’t help asking. I didn’t want to be stuck up. I just wanted to get into college on scholarships because my parents couldn’t afford to pay and I really, really needed to get out of my home town, plus my mom told me she would probably kill herself if I didn’t have a successful run through college. So I needed to get A’s and be on top of things. I should have been proud, but I wasn’t. The gas lighting worked.

When I was 16 and my brother was 19, I was trapped in a car with him driving to our parents’ small business. He was doing  his road rage thing, and scaring the crap out of me, and I asked him to stop. He started punching me in the arm as he drove, tailgating all the while, and yelling at me. He punched me over and over again, deliberately in the same spot, and in that moment I did something I’d never done before. I mocked him. “Oh big maaaan,” I crooned, “Aren’t you the tough guy, beating up on your sister who weighs a hundred pounds less than you. Tough guy, what a tough guy.” It didn’t stop his punches, but it stopped my tears. When we arrived, he got out of the car, still yelling. He stuck his head back in and spit a giant wad of spittle in my face, called me a “F**ing C**T,” and stormed off.

I never got an apology, though it was the last time he ever hit me. That event was my fault, in his view. He was stressed out. He had this issue and that issue. I was a bitch. I was stuck up. I always got everything I wanted. I did this bad, and I was that bad, and I was bad bad bad and it was all my fault, and it was never his fault.

And so it has continued through the years, through the half century of my life. After we were adults, the put downs and insults continued, though there haven’t been as many opportunities for them, and though there have been moments of calm when the ugliness doesn’t rise up. Even with this blog, where I mock myself frequently without mercy, my brother likes to pile on. Yeah, that’s true about you, he’ll comment about some self-criticism. There’s no irony in him.

As adults, he also added a new element — the threat of disowning me. “You’re not my sister anymore.” “I’m done with you,  have a good life.” “I never need to speak with you again.” “If  you don’t  blah blah blah, you don’t ever need to be part  of my life again.”

And every time, I’ve let it go. I’ve made excuses for him. Maybe I was too harsh. Maybe I was unkind. Maybe I wasn’t sensitive enough to his profound self esteem issues. Family first. Mom needs us to be a family. And so on. He never apologizes, because it’s never his fault. It’s always mine.

So it happened again over this weekend. His daughter, my niece, and I had a back and forth that devolved to her doing the same stuff he’s done to me for my entire life — calling me names. I’m disrespectful, I’m rude, I’m a bully, I’m this, I’m that. For some reason, this weekend I just couldn’t take it anymore, and I hit back.

The details don’t matter. What matters is that I went low. I definitely did not go high. I was acutely upset and I spoke harshly, including criticizing my brother. My niece shared my words with her dad (is that tattling? I’m not sure), and then he sent me a text chewing me out for going after his kid and telling me to “have a good life.” Also the classic: “You don’t know me.”

But I do, I thought sadly. I’ve known you my whole life. You’re the jerk who’s been gas lighting me my whole life.  This is what I wrote back:

I’m sorry. She was really nasty to me. And had I not been so angry and hurt, I would have added that you’ve changed so much. I love you. I’m sorry you want to reject me. It feels  like a lifelong story of you looking for reasons to hate me. I guess you finally have a reason. But I would still throw myself under a bus for you.

And still I couldn’t help it. I still felt like the bad person.

I know, all the way to my bones, that my brother will never apologize to me for anything. Nor will his daughter. It is not in their constitutions. And they will say I don’t know them at all, but on this I surely do. Nothing is ever their fault; it’s always someone else’s.

Actually, it’s always my fault, because I’m rude, I’m stuck up, I’m a bitch, I’m nasty, I’m a know-it-all, I’m a horrible person.

They are gas lighters.

* * * * *

I cried about it for a while, with Anthony beside me, thinking hard thoughts I’ve had almost since I can first remember having thoughts. Am I a bad person and a cry baby and a stuck up bitch and a know-it-all and too pushy and everything else this person has ever called me?

But last night something new happened. A light dawned unexpectedly, one that’s been waiting to dawn for a long time. Anthony had read the entire exchange between my niece and me, and between my brother and me. I wanted his insight and advice. He spoke these simple words, from the place of love and compassion that he’s always reserved for me: “Please don’t beat yourself  up too much, Carla. It’s not your fault.  Sometimes we get pushed too far. You’re allowed to be human. You tried your best. They went too far.”

I think maybe it’s the years of therapy with Jesse paying off for me. I finally felt it in my bones. Racing thoughts filled my head. Am I being too hard on myself because of an extremist moral code that’s a symptom of OCD? Is it actually rationally possible that everything is my fault and the other humans involved did nothing wrong? Is it rationally possible that Anthony, who’s always brutally honest with me, is lying to me this time instead of letting me know I really screwed the pooch?

* * * * *

I went to sleep with a surprisingly light heart and woke up this morning from a sound night’s sleep. I felt at ease as I drowsed in bed, which is really unusual for me under any circumstances. Many thoughts swam through my head, as Nick snuggled up his little body next to mine:

I’ve been really patient with my brother’s abuse of me through these many years. It’s okay to not feel patient anymore, especially when one of his children looks to be carrying it to the next generation. Last straws happen, and it’s okay to draw a line in the sand. It’s okay not to accept his false image of me anymore.

Anthony has offered me an alternative truth about myself through the years, persistently, despite my rejection of it. He has told me so many times that I’m a decent person, a kind person, a good person. Why does he have to keep telling me? Because I keep rejecting it. Maybe it’s time to see not only my flaws through other people’s eyes, but also the things that make me lovable and good. Maybe Anthony’s truth about me is more true than my brother’s.

I make friends. I’m always surprised by this, and I sometimes express that surprise aloud. Why are we friends? Why do you like me? It’s kind of embarrassing. Pathetic, really. And how many times have my friends answered me with jolly kindness and an eye-rolling head shake. I guess they don’t think I’m a selfish, stuck up, self-aggrandizing bitch. They think I’m okay. More than that, they seem to think I’m a really good person. Maybe I should respect their opinions.

It’s very hard to explain how profoundly difficult that is for me to accept. It actually makes me weep, to realize I’m okay. I have to rationalize it, still, over and over again, like Stuart Smalley.

I know I listen to others about myself, because otherwise Anthony would stop bothering to be honest with me about my negative behaviors. My friends wouldn’t mock me and laugh. You can’t do that to a person who takes stuff personally and thinks she’s right about everything.

I know I’m open to debate and different world views, because I have open exchanges with conservative friends about big issues and we don’t tell each other to go away. That wouldn’t happen if I were disrespectful and rude.

I have easy-going, healthy relationships with my other brothers. We speak openly with each other about our weaknesses, without anger or bile or accusation. If the problem was me and only me, that could not be true.

And the hardest thought, but one I’m feeling at ease with today, is this. A person who says he’s disowning me over and over again, through decades of my life, isn’t just making idle threats. He’s bullying and abusing me. I have the power to dismantle the threat by acknowledging it in the open air — as I am boldly doing right here, right now, despite some misgivings — and simply accepting it. So I accept the very real possibility that this relationship is over. I didn’t end it, but I don’t need to try to rekindle it anymore. I accept the very real possibility that I may never again spend time with a person who brings a lurking sense of hostility to every encounter with me, a person who has spent a lifetime making gaslit, false accusations that I suck to the root of me. I’ll be sad for sure, because family is family, but I think I’ll also enjoy the absence of this source of stress.

I’m not saying I’m perfect. I’m always going to take responsibility for my own words and actions, and of course I feel badly about word-battling with a grown-up teenager. I should have gone high. And yes, I suck, because well, people suck and I am a people. But also, I’m allowed to look after myself. I’m allowed to feel good about myself, even if I make big mistakes. Not OCD nor some mean-spirited gaslighter is going to take that away from me anymore. Not without a fight anyway.

 

Mommy fail, version 2935.3 (post-Trump edition)

I’ve been yelling at the kids a lot again lately. It will be a lifelong battle for me, I know, but still it gets me down when I flare. I haven’t been doing a good job of walking away when the weird rage bubbles up. As Anthony says, I need to make a plan again. I need to practice self control.

Don’t make any excuses for me, dear reader. Yes, I’m justified in being aggravated by the kids; but no, I’m not justified in yelling and yelling.

Then again, sometimes I don’t even have to yell to get things all mixed up.

* * * * *

Jesse gets a small allowance every week, and also she gets cash from her grandma for special occasions. She’s welcome to use that dough on what she wants, but she’s a money hoarder. She doesn’t like to spend it. She’s not sure what to do with it. She doesn’t care all that much about things. Nick, not so much. I wouldn’t describe him as greedy, but he’s very interested in spending, usually even before he has the money in hand. He’s destined for debt. Two kids, one house, two very different personalities. Nick’s wallet is always almost empty; Jesse’s is always overflowing.

For a while when she was little, Jesse wanted to take her small wad of cash to school to give to friends she felt were poor. That led to interesting conversations about the unfair stigma associated with being poor in America, and the resulting need for social sensitivity and coyness in how you address the issue.

As she got older, Jesse began to talk about charities. Just last week she was saying again that she wanted to give all her money to a charity. Sometimes when she breaks something expensive, she’ll run upstairs and bring her purse to me in atonement, insisting that I take all the money I need to replace whatever she broke.

Her selfless attitude imbues our lives in small and large ways. We renovated our house a year or so ago, expanding the kitchen and so on. Jesse regularly reminds me that she preferred to the old kitchen better, because it wasn’t so fancy. Thanks to her, I’m always aware of how luxurious our life is compared to most of the world. She gives freely to her brother and her friends. She shares relentlessly.

I know without any question that Jesse is not a greedy or selfish child.

* * * * *

But Jesse also has OCD in a version that fills her head with contrary and taboo thoughts now and then (okay fine, every day), and Tourette’s in a version that compels her to express those thoughts aloud. This can make life aggravating and complicated.

A couple days ago, Jesse was wandering around the house before breakfast with her well-stuffed little money purse in hand. I asked her what she was doing with it. She answered in the strange, almost-chanting timbre that signals she’s expressing unbidden intrusive thoughts. “I’m gonna take it to school to show everyone, and tease them about how I’m richer than them and I’m better than them.”

I knew those words weren’t true. I knew she would never actually do it. I knew those words are contrary to most of what I’ve observed in her behaviors during her brief life. I should have hugged her, reminded her that those thoughts don’t reflect what she actually believes and does, assured her that she’s still a decent and amazing human being despite the intrusive thoughts to which she gives undue weight.

But that’s not what came out of me. In that moment, under the stress of everything that’s been going during the beginning of Trump’s presidency, something snapped a little inside me. It didn’t take me to the yelling rage that unleashes itself on people I love when I’m not working hard enough to beat it back — but someplace really, really sad.

Jesse sat down at the counter for breakfast, with Nick next to her. “That’s really mean, Jesse,” I said unnecessarily; I was practically whispering. “Do you really think you’re better than people who don’t have as much as you?”

It was a stupid question; of course she doesn’t actually think that.

Nick replied promptly and earnestly, “No! We are not better!”

Jesse pondered  for a moment. “No? I mean yes, yes I’m better.” It was her tic voice.

She paused. “No, I’m not.” Ah, that sounded like my true Jesse.

But still, I was stupefied by the initial “yes.” Part of my brain was sending me red alerts. “Warning! Warning! Tourettic OCD in action! Do not respond! Do not respond with anger! Do not be didactic!”

But a bigger, hurting part took over. I grabbed my phone. “You think you’re better than people who are more poor than you, who have less than you? Then let me show you someone you’re better than.”

I don’t know what I looked or sounded like, but I was just pulled together enough to notice the kids had stopped eating and were staring at me, unblinking and anxious.

I searched for “dead toddler refugee” on my phone.  I pulled up this infamous photo of the toddler who drowned as his family escaped from Syria.

Screen Shot 2017-02-01 at 11.37.52 AM.png

(I’m not sure how to give proper  credit here, and I don’t know if I’m violating a copyright law. I know wherever I find this pic it says “Credit: AP photo” so hopefully that takes care of things)

I showed this heartbreaking photo to Jesse, even as my brain told me I was doing wrong. “Look at him, Jesse. See this dead little boy? Look at him. He died trying to get away from war with his family. This is how they found him, washed up on a beach. He had nothing, and he’s dead now. You’re better than him for sure.”

Jesse, who suffers from anxiety and panic attacks, had a look on her face I could not place; but she was silent and still. I went on, and this is what I said to my children.

You are not better than that little boy; you’re just alive and he’s dead. You’re just lucky you don’t live in a land at war, you don’t live in poverty, you don’t have to run in fear for your life from the soldiers and guns and bombs. You didn’t have anything to do with your good luck! All you should be feeling right now is a whole lot of gratitude for being so lucky.

Being richer doesn’t make us better. But it’s making our country greedier. And now, our president Donald Trump has said that this little boy, even if he had made it alive across the waters, would have no place in America. He isn’t welcome here. Because we’re not rich enough or strong enough to help him.

By now I was in tears. Jesse simply stared at the photo.  I went on, because I couldn’t stop, even as I wandered around the kitchen cleaning up and making school lunches.

This  is the battle of our time, I said. There are children and innocent people dying all over the world right now, and they need help.

“Children?” Nick asked incredulously. He started to cry too as I yammered on quietly.

This is why people like your daddy and me are so upset about Donald Trump, and we want to rise up in protest and action against everything that he stands for. This is about what kind of people we want to be, what kind of basic values we have as human beings. Donald Trump thinks we should think about ourselves first. Do I have a car that’s as nice as I want in my garage? Do I have as much money as I want? Are my clothes fancy enough, and is my closet stuffed full enough? Do I feel safe enough? Do I really have to share the incredible wealth we live in with others, like this little boy who died? He didn’t do anything to anyone! He didn’t deserve to die!

I looked  at the kids pointedly. Do you want to live in a world where we only think about ourselves first?

Nick was bawling by now, I was crying full on, and Jesse’s face had slumped. But they gave me the correct answer.

I asked my kids another question: if I told you we could give some children safe refuge from war and fear and hunger, or I could get a new car instead, which would you choose?

They gave me the correct answer as I wept.

You’re okay with me driving that beater VW until it dies?

“Yes!” they answered. “Drive the old car!”

I asked my kids another question: if I told you our leaders could give us tax breaks so we can have more money in our pockets, or our leaders could have us pay a little more in taxes and spend some of that money to give hope to refugees around the world, which would you choose?

They gave me the correct answer.

The conversation petered out, the tears slowly dried up, and we were silent until it was time to take Jesse to school.

* * * * *

I felt pretty awful afterwards, and I haven’t been able to stop thinking about that horrible conversation. It was unfair of me to unload these issues on them. It was profoundly unfair of me to imply to Jesse that her intrusive and obsessive thoughts are in any way related to the intentional, deliberate choices being made by the Trump administration and the GOP. I know where her compassionate and generous heart lies.

It was a definitive parenting fail moment, even though I didn’t yell even once.

And yet… And yet I know that my kids need to be aware of what’s going on in the world around them.  Maybe if a two-year-old has to drown to death while escaping from hell, or an innocent five-year-old has to be put in handcuffs at an airport, my seven- and eleven-year-olds could do with some reality checks.

 

IT’S NOT A MUSLIM BAN

People are seriously upset about what they’re calling a “Muslim ban” on immigration to the US. But Donald Trump has spoken about his Executive Order  suspending visas and banning refugees from Syria and a good chunky handful of Muslim-majority countries. “It’s not a Muslim ban,” he told us as he signed the order.

And really, he’s someone we can trust because he always tells the truth, he always tells it like it is, so I’m good. It’s not a Muslim ban, this I know, for the Donald tells me so.

Everyone who matters (i.e., conservatives, republicans, right-wing commentators, Fox News) agrees. Even Paul Ryan says it’s not a Muslim ban. Everyone else, all the other people in the world who see it differently? Hello. They’re liars, cry babies, fakers.  Fake news. Dishonest and crooked media and useless sorry Democrat pansies. I’m making a big “L” with the thumb and forefinger of my right hand and holding it up to my forehead. Losers.

Plus, the EO doesn’t actually say the word “MUSLIM,” so obviously it doesn’t apply to Muslims. Because if the EO was meant to apply to Muslims, Steve Bannon the white nationalist wouldn’t write it in a sneaky way that might avoid using that word but still accomplish the same thing. Duh.

Just like last week I yelled at my daughter about somebody leaving a bunch of dirty clothing all over the floor in her room. I did not mean her. I obviously was not referring to her, because I did not say her name. I just happened to be channeling my yelling in her direction. Duh.

Donald Trump says he’s keeping his campaign promises. This immigration EO is obviously fulfilling one of his promises. Just not the one about Muslims.

Trump said in December 2015 that he was “calling for a total and complete shutdown of Muslims entering the United States until our country’s representatives can figure out what the hell is going on.” This call is contained in his “Donald J. Trump Statement on Preventing Muslim Immigration,” which continues to be posted on his website:

Screen Shot 2017-01-31 at 10.36.53 AM.png

But that promise to actually ban Muslim immigration because Muslims are such bad people does not apply to this EO, obviously. So calm down, everyone. Stop getting hysterical. This EO is not the Muslim ban that Donald Trump promised in his Statement on Preventing Muslim Immigration.

Duh.

Why I did not join the women’s march

Did you hear about the women’s marches all over the world a couple Saturdays ago, on January 21, 2017? I don’t know how I missed it, but probably it’s because I was still reeling from the massive turnout for Donald Trump’s inauguration. Massive. The biggest inaugural turnout in history. At least, since 1988. For Republican presidents anyway.

Right.

I take it back, I did hear about the marches. But I chose not to go to one, and here’s why, long version.

* * * * *

Last month my mom fractured her femur, the big thigh bone, right where it goes into the hip. To understand the full import of this, you need to see drawings. Here look, I found a picture of a femur:

Screen Shot 2017-01-27 at 11.19.06 AM.png

Very Flinstones, yeah? Okay, so that ball thing that juts out at the top, that slots into a space in the hip bone, where it can swivel. Mom’s femur broke like this (do enjoy my scientific, sophisticated annotations):

Screen Shot 2017-01-27 at 1.42.19 PM.png

It’s apparently a very common fracture, which is understandable when you think about how much force that part of the bone has to bear. It’s the cost of having really great swing capacity in our legs so that we can do things like run away from grizzlies in our elementary schools because our teachers don’t carry concealed handguns to protect us.

Just to be clear, the bone didn’t sort of crack a bit. Rather, the bone snapped and shifted, just like I imagine pieces of California will sort of move sidewise and slide off when The Big Quake hits:

Screen Shot 2017-01-27 at 1.46.10 PM.png

(Didn’t I do a nice job of that with scissors and tape? Can you tell I have a first-grader in the house?)

When I finally understood this, I almost cried, because I know that it was six hours from the fall that caused the fracture to when someone finally called 911. Six hours like that before help came for my mom. Brutal.

Left uncorrected, the bone would have eventually knitted itself back together in this new shape. Given the amount of movement with the break, the doctor estimated Mom’s leg would have been about one inch shorter. Maybe she would have been able to walk, but it would have been like a galumphing crippled old lady for the remainder of her days. Which, if it weren’t so horribly awful, would have reminded me in a demented way of my maternal grandmother, who walked with a pretty good limp because one of her feet had been paralyzed by polio when she was young, before the age of vaccines.

But thanks to modern medicine — science  this is not Mom’s fate.  A surgeon was able to repair the bone using titanium rods. Here is what I saw in the x-rays:

Screen Shot 2017-01-27 at 1.38.08 PM.png

I kid you not. This is a really good likeness of the size of the rods, though presumably not the color. The short rod was embedded in the ball part. Then it was connected to the enormous rod that was jammed all the way down to the knee in the femur.

I felt like I was looking at an x-ray of Wolverine’s femur. What did they do, pour molten titanium into Mom’s leg? Viewed in two dimensions, the rod was filling more space than the bone. It had to be at least an inch in diameter. I couldn’t really wrap my head around what I was seeing. I made the mistake of asking the doctor how they did it. By the time he got to “reamed the bone,” I was weak-kneed. And I was shocked by the full-length rod. Apparently that’s what they do to prevent further fractures, because the entire femur is reinforced and that rod distributes the load evenly when Mom walks, so it prevents any sort of point-loading.

That surgery was six or seven weeks ago, and my Mom has been 100% sidelined during this early stage of recovery. My brother Mark lives about a mile away, so he’s been her primary caregiver since then. Mom and her husband John can’t drive, so Mark does all the shopping, he takes them wherever they need to go, he fixes whatever needs fixing, he manages all the appointments and prescriptions, he plans and cooks all of their meals, and he fills whatever random financial and personal needs come up.  Also he has three puppies and two full-grown dogs. Long story.

Since I too am a full-time caregiver and housekeeper for two kids, a dog, and a husband, I have a visceral empathy for what Mark is going through.

* * * * *

So last week I flew out to California by myself for a full week, to give Mark a break and hang out with Mom and John. This meant I was leaving the kids alone with Anthony for a week, which was an imposition on everyone, but I really needed to go see my mom and do my part.

I left Wisconsin on Thursday, the day before Trump’s inauguration, and shimmied over to Stockton, the armpit of California. Meanwhile, my brother’s mother-in-law Jane invited me to join her at the Women’s March in Sacramento, an hour away.

I thought and thought about it. I wanted to go. I wanted to join hands with my brothers and sisters resisting Trump. But I couldn’t. I decided that, in this moment and this time, my mom needed me more. She may only be with me for a few more years, and I see her so infrequently.

* * * * *

On the day of the Women’s Marches all over the world, I seemed to reflect a lot of what the Republican Establishment claims to value in women and people. I do not work for an income, with pride: I am a housekeeper and full-time mother by choice, and I take it seriously. My children have great need of me. I used to work, but I quit to become a mom. Since I don’t work for income, I put extra effort into being as supportive a partner as possible of my husband’s career.  I have never had an abortion, though I have miscarried, probably from drinking too much coffee before I knew I was pregnant. (Is that a crime yet?) I’ve never had an extra-marital affair, and I’ve only been married once. I am not on welfare or any public assistance. I don’t do illegal drugs. I don’t do anything illegal that I know of. I’m not an illegal immigrant. I like to think I have a pretty firm moral center, with good values on family, honesty, integrity and —

I do have potty mouth. But let’s be honest, that’s a superficial and silly standard. Plenty of Republicans have potty mouth too. And despite my potty mouth, I will just admit that I would be very, very uncomfortable dressing up as a entire-human-body-size vagina. I’m not sure I could do it.

Right, so I missed the marches because I was fulfilling an obligation and responsibility, borne of familial love and fealty, to cook and clean for my parents and give my brother a much-needed rest from the relentless grind of being a full-time caregiver. But the truth is, I would have marched if it was a dire emergency. I didn’t march on January 21 because I didn’t have to. My brothers and sisters marched for me. They were on it.

* * * * *

I’ve struggled to write much recently, because I find that all my efforts to make myself laugh, with my sarcasm and my grumpy, are failing. I don’t understand my American world right now. After a week of Trump in power — which I think is a more apt description of what he’s doing than the word “office” — I can feel the darkness descending. The worst part of it is the endless gas lighting that’s going on. I have grown so weary of it, so let me just get this off my chest.

I keep hearing that people like me need to understand the Trump voter. Why? Why doesn’t the Trump voter have to understand me instead? I’m part of the cohort that voted for Clinton, and there were more of us. Shouldn’t the majority be understood too?

I didn’t march on January 21, but I would have if I could have, and I have this to say.

Don’t tell me that the post-inaugural marches and protests were about gender identity, or judging others, or victim mindsets, or being sore losers, or whatever you feel like making up. No no no. I believe the marches were so heavily attended because people are really, really upset about being unrepresented. The majority of voters in the national election last November are now unrepresented in the federal government. How are we unrepresented if there are Democrats in both houses, you ask? Because Republican Congressmen and the new president don’t give a shit. They will not compromise, as far as I’ve seen. They don’t have to and they don’t want to:  they own all branches of government. At the state level, they are successfully gerrymandering their way into untouchable majorities, even when voters are evenly divided between D and R. They are planning to push through an ultra-conservative agenda that includes positions that are unequivocally contrary to the will of a majority of the American people on fundamental issues like abortion and healthcare.

Don’t you understand the problem, Trump voter? You should, since your candidate whined about it so much on your behalf: being represented matters. It matters not only to you, but to everyone, including all the people who voted for Clinton. And there were three million more of us than you, if you live in the real world where facts matter. How would you feel if your candidate got the most votes but didn’t win the prize?

How come we’re not allowed to feel the same way?

Don’t tell me that the post-inaugural marches were about putting women down who make more “traditional” choices. Nonsense. The marches were about letting people be who they want to be, in a land governed by a basic notion of liberty and, well, representation. I’ve made traditional choices, and not one person in my expanding universe judges me for it. My relations who marched understood why I stood down on January 21. I got nothing but love for it. Plus a lot of texts and photos from people who knew I was feeling a little left out. I was represented at the marches.

Don’t tell me that the post-inaugural marches were about telling women what they can and can’t do with their bodies. What a load of gas-lit nonsense. Legislation that limits a woman’s right to make  choices about her own body constitutes telling people what they can do. Period. I do not recall anything in the Democratic platform that involves legislating limitations on what a woman can do. Not writing and passing laws about limiting a person’s freedom… does not constitute an effort to limit a person’s freedom. (Why do I even have to try to explain this?)

Don’t tell me the post-inaugural marches were anti-Christian and intolerant and meant to exclude. Puh. leez. Worse than nonsense — smug, self-righteous alternative fact, more like. The marchers I knew were Christian, Hindi, Muslim, Jewish, atheist, and everything in between and sideways. They included Republicans, Democrats, independents, and nut wings. They included people who are opposed to abortion (but who believe the best way to win that battle is through compassion and education and contraception, not liberty-denying legislation and ignorance) and people who think it’s fine. They included gun-lovers and pacifists.  They included people of so many ethnicities and national origins. They included men and women, straight and gay and whatever.

And you want to tell me the marches were intolerant and exclusive, from your “we need laws based solely on Euro-Christian values” perspective? That’s goofy.

Don’t tell me you were offended by the post-inaugural marches because they were vulgar, and some people dressed like a big vag, and there was cussing and nastiness. Seriously. You voted for Trump, and you’re offended by vulgarity? Am I missing something?

Trump voter, you really need to understand the people who marched on January 21 a little better. Follow this particular chain of thought with me, for instance: (1) OMG, Trump is a racist and sexist pig who says a lot of really horrible things about women and lots of other people; (2) OMG, Trump lost by 3 million votes but he won the election, and now he’s acting like he has a mandate; (3) I know, let’s make fun of his “grab her by the pussy” comment by dressing like giant vaginas and inviting him to “GRAB THIS.”

It’s that simple, so get over the false moral outrage — it’s not like the people at the march go around in the ordinary course of their lives dressed in giant vag costumes. They were reacting to Trump. It’s a one-off that’s intended to provoke and inspire attention, but it’s not really fashion-forward, yeah? Kind of like Trump saying over and over that Clinton should be in jail, but now he’s done with that because the need for that bile-inspiring soundbite is over.

I have to say, anyone who’s willing to walk around in a 6-foot-tall vagina costume is pretty ballsy. But here’s the thing: the vag suit is about representation. The people who marched feel invisible, unrepresented, silenced. The raunchy signs and costumes were about being acknowledged. They were a way of saying to Trump and the GOP Establishment, “F*^& YOU WITH YOUR SO-CALLED MANDATE. REMEMBER US??? WE’RE STILL HERE AND WE STILL DIDN’T VOTE FOR YOU!!!”

And that’s how hard we have to push, because no one is listening in our federal government right now.

At least not yet. But that may change, if we keep marching.

But let’s not stop at marching, because that’s only the public face of a large battle that lies ahead. Since I could not participate on January 21, I enjoyed no personal catharsis from the marches. I just looked on wistfully. But from the outside looking in, they inspired me profoundly to think about what I’ve been doing and what I need to do. I have a short to-do list, which I hope to pursue fearlessly. Maybe you can too:

Make phone calls to your representatives. Every day. As I learned recently, you would be well-served to include this information: I am Jane Doe. I live in American City and (if it’s someone you vote for) I am your constituent. I am concerned about the issue XYZ, and this is what I want you to do about it.

Write letters and send emails. Every week try to send one letter or email that carefully states your position on something important to you. Send it to one or more of your representatives.

In conversations and on social media like Facebook, don’t let anything go. If someone posts a link or a comment that includes a lie or misunderstanding, don’t let it go. Answer it with facts and sources. As politely as possible, be firm in presenting your positions on important issues. Engage with people who hold different points of view, and make them hear you.

Because right now, if you are opposed to Trump, the only meaningful voice that represents you is your own. Maybe more important, your voice can represent others who cannot speak for themselves. Like my mom, her body broken by a couple fractures over the  last few years, her brain a little off kilter from a stroke. She can barely speak English anymore. Who will represent her in Trump’s America? If all her children get hit by buses or accidentally rounded up by immigration peeps and deported to some other land because we don’t look quite right — or is that quite white? — will there be a safe place for her in this world? Will she be able to get health insurance at all, let alone any that’s affordable? Or will she be the victim of a true death panel, doling out Medicaid coverage from some tiny fixed block grant that has to be triaged? Will our government — the collective voice of the people, after all — be an ugly, angry machine set on silencing dissent and empowering the wealthy, or something better?

So I will speak for myself, and my children, and my mom, and for all the other people who are likely to suffer in the coming days. I will seek representation. And I will remember to thank everyone who marched on January 21, for reminding me that I matter.

 

 

happy inauguration day

Listen, people —

I know I know, that’s a really original lead, right? I feel really creative about that start, it’s big, it’s bold, and even my tiny Trumpian hands can type it easily. It’s very original. Nobody has ever written a better blog post starter, and I promise you, I promise you, people are going to love this blog, we don’t even know what this blog will say, but I promise it will be better than anything you’ve seen before.

Never mind.

I thought about beating the horse dead, but I think I’ll just get right to the point instead: there is nothing new under the sun.

I mean yes, there is, sort of, but really it’s the same sad/happy/horrifying/boring story over and over again, and with today’s inauguration we hit version 4,275,948,104. Point two.

A lot of people are feeling pretty doomsday right now, like Trump is going to destroy everything. And I’m not so sure. Yes, he’s a jerk. Yes, I believe he and the RNC single-party dance of the next two to four years is likely to be pretty disastrous. But, unless something goes truly and horribly wrong, we can keep things from falling off the cliff’s edge. I think.

But it’ll take some work.

* * * * *

There have always been mean, rude people who take credit for anything good that happens and blame others for anything perceived as bad; who brag vainly about themselves and put others down; who lead by terrorizing instead of inspiring; who think winning is the one thing that matters above all else, before honor and justice and liberty. Trump, despite his delusions of grandeur, is just another expression of this sad and bitter archetype, just another ugly blip in the grand scheme of things.

That’s all he is.  A data point, and a little one at that.

There have also always been people who work hard to be kind and well mannered; who understand that we share in a collective bounty of success and failure; who lift others up and celebrate others’ victories; who understand that winning for the wrong reasons is just another face of failure.

We’re still here, each of us another data point, each of us as big and as small as Trump. We have as much power as we’re willing to exert. No orange-faced data point can take that power away.

* * * * *

There have always been hoarding, greedy people who were either born rich or got rich, sometimes with hard work and always with good luck; who don’t have an altruistic bone in their bodies; who spend their lives complaining about every single penny they have to pay in taxes and whining about how life is soooo unfair to them (while the undocumented resident cleans their toilets). So Trump and most of his cabinet fit in as little blips on that story line. Whatever.

There have also always been selfless, inclusive, generous souls, some rich and some poor, who are driven to do right by all human beings without cold triage, and without reference to their own interests and needs; who understand that humanity will ultimately stand and fall together like a house of cards; who feel in their bones that even one lost, unfulfilled life is one too many.

We’re still here, and there are more of us than the Trumps. We know this because we voted for someone else. We know this because, in the big arc of history, despite setback after setback, life is getting better for most human beings. Not in a two-car-garage-and-great-manufacturing-jobs-in-America way, but in a more baseline way — less hunger, less poverty, less disease and death, less discrimination, less abandonment, the world over.

There are more of us than there are xenophobes. Not even a cabinet worth more than 14 billion dollars can change our blippy little minds.

* * * * *

There have always been people who are mean and vicious, murderous and violent, bigoted and bitter. Trump happens to speak for them in this moment — but he’s just one face and one voice. He’s not the power behind the ugliness. People are, little people. All these little blips running around on planet earth, each of us as weak and as powerful as Trump.

As for our planet earth, let’s not panic too much on her account. Trump can’t destroy Mother Earth. Human beings may well destroy the environmental conditions we need to survive in, but that’s not going to take down sweet Gaia. She will keep on keeping on, long after our species has expired, and probably  arrange for a whole new mega-species to take over in 70 or 80 million years.

Take heart in that, my friends.

Anyway, we’ve been busy destroying our environment with greenhouse gases and pollution for more than a century, long before Trump took office. If we want to slow global climate change and pollution, we can do that: the sixty-odd million humans who voted for someone other than Trump can stop driving and flying as much, stop buying and using as much, start buying more locally grown food, and so on and so on. We have the power to do that. 60 million of us have way, way more power to change the environment than one Donald Trump. Maybe it’s time to own that power instead of handing it over to corporations.

* * * * *

So I propose we go ahead and do that, stop giving away power, we people who are deeply upset by today’s inauguration. I propose we step out of the sad sack of depression and anger we’ve dropped ourselves into. Let’s get our grumpy on and get to work, not en masse at marches that make us feel good but are really hard to organize, but as little random blips haranguing our leaders and corporations from all corners. This is one thing that has changed in the history of humanity: we are seriously connected. Use it. Call your congressional reps and senators and local legislators and governors incessantly to tell them what you want and what you care about. It’ll be humiliating at first, but you’ll get over it. Sign petitions. Write letters — to elected officials, to corporations, to media outlets. Never stop.

Find out who needs help in your community, and then help them. Give stuff to people who are broke, if you’re not broke yourself. Lend money if you can, to friends who need it. Donate your time if you have it, to charitable organizations and public schools. Just do something, anything, to help someone out.

Be a pain in the ass blip, for goodness sake. I don’t know — sky’s the limit, right? Why let the Orange Man stop us from being the decent people we believe we are?

Happy inauguration day, Mr. Trump.

Yule log

I made a Yule log. Why, you ask? Because cake, whipped cream, chocolate frosting. 

By making all of it look like a dying plant, I make it Paleo. 

I baked a thin chocolate cake. As instructed, I rolled it in a powdered-sugar-coated dish towel to cool. I made a whipped cream filling, with a bit of insty-vanilla pudding thrown in to make it more sturdy. I made a thinnish chocolate frosting. 

I have no photos of these separate pieces because I was covered in muck and desperately cleaning up after myself so the kitchen wouldn’t look like a health hazard. 

So then I unrolled the cake when it was cool. I’m not sure what was supposed to happen. Was it supposed to remain of one piece?

That was not my reality. In fact, the cake fractured. It looked like the surface of a melting glacier, or a sere sandless desert, or the skin on my heels after a long winter. A bunch of crumbling strips of cake. 

But I’m industrious and simple minded. So I blithely spread the whipped cream stuff on the strips and tried to reform the cake strips into a roll. I thought I’d be able to roll it up and strip off the towel easily, like I was making a giant chocolate-cake-whipped-cream sushi roll. But I guess I didn’t sprinkle enough powdered sugar on the towel. I had to work very hard to get the cake separated from the towel. It was a brutal affair. 

But I managed. I cajoled and mauled that cake into a roll. I smashed it all together with my strong, firm hands. Then I slathered it in chocolate frosting. 

I didn’t make enough frosting. I didn’t know the log would be so huge. Still, I did the best I could. I just smeared it on until it was all gone. The ends and the bottom parts near the plate were bare. I figured it just made it more realistic, like a tree rotting in the woods.  I scraped the frosting with a fork to mimic tree bark, and then for authenticity I sprinkled it all with powdered sugar for snow. 

It is a giant pile of smooshed together chocolate cake, pudding-ish whipped cream, and chocolate frosting. 

Kinda pretty: 


Okay, no. That’s just the magic of a distant cheap shot on my phone. Up close and person? It looks like I dropped it:


Not for company.

 But in my mouth, it tastes fine, just fine. Nom nom nom nom. 

Gifts

In a year of relentless negativity and and awful political developments and terrible suffering in places like Afghanistan and Syria, a celebratory holiday season feels like a non sequitor. Look at all that’s gone wrong this year — an ugly divisiveness that permeates our culture, wars and strife and growing xenophobia around the world, the rise in a foul noise of white nationalist racism, the ascendancy of a madman to the presidency despite his firm rejection by a majority of voters, my daughter’s own terrible struggles with physical and mental health issues, my husband’s miserable year of gout attacks, months of ongoing sickness in our house since August, my mom falling and breaking her leg just a couple weeks ago.

What’s there to celebrate?

Still, I can’t help but see gifts all around me this time of year, because I’m looking for them. We are a family that celebrates a secular Christmas, regaling our children with shamelessly excessive Christmas lighting and decorations and shamelessly abundant gift-giving and shameless overeating. But we all know that the greatest gifts aren’t the money in our pockets or the trinkets lining our walls; they’re the little things that stick in our craws.

* * * * *

A classmate joins Jesse for school lunch regularly, even though she still eats separately in a quiet room in the school offices. I’m pretty sure he’d often rather be in the cafeteria with other friends, but he eats with Jesse day after day with few exceptions. I don’t know why he does it, friendship or love or kindness or decency; but I know it’s a lifeline for Jesse.

Then another classmate unexpectedly joined Jesse for lunch last week. I asked Jesse how that came to pass. She replied that this little girl had asked to eat lunch with Jesse, “because her mom told her I might be lonely so she should do that.” As Jesse told me this, a smile burst onto her face and she skipped around the room joyfully for a few seconds. It almost ripped a sob out of me.

(I controlled myself then but now I can’t, so give me a minute here while I deal with this dirt in my eye.)

* * * * *

There’s a smallish group of parents I share time with on the elementary school playground now and then, after school lets out. It began as just an easygoing collection of parents who share a simple value — kids should have time to play — and it has evolved into what I believe are true friendships among the parents as well as the kids.

This year, I had a lot of need for child care. Nick needed a place to go as I carted Jesse around to doctor’s appointments and intensive outpatient treatment at the mental health hospital. My merry band of after-school friends stepped in. There was always a safe place for Nick, someplace where he knew he matters as much as Jesse. There still is.

And sometimes folks will even let me have their kids over. Bonus.

* * * * *

We went to a new psychiatrist this fall for Jesse, a doctor who has a very intense interest in whether auto-immune conditions are the root causes of mental illness. I went along with her suggestion that we do a ton of bloodwork to explore these issues, though I have tremendous skepticism. The science is still out.

I’m sure this doctor gets a heavy dose of grief from the medical community for her intensity, but she just keeps soldiering on and learning as much as she can. That bloodwork she ordered may or may not have exposed some ongoing auto-immune issues, but it did identify Lyme disease. And I have to say, since Jesse was treated for that, stuff has been getting better. A lot better. Maybe Jesse has had untreated Lyme disease for a really, really long time. Out of all the doctors and experts we’ve seen in all the gin joints in the greater Milwaukee area, this one psychiatrist’s fishing expedition found a really important treatable problem in Jesse.

* * * * *

A couple weekends ago, we went to a colleague’s party in the evening, kids in tow.  There was plenty of food, but almost nothing for Jesse because of her egg allergy.  The cookies all contained eggs. There were deviled eggs. There were dips with unknown ingredients. There was a giant chocolate cake and she couldn’t have one bite of it. Jesse handled it as graciously as she could, but it was a pretty pitiful little girl who walked out of that house at the end of the evening.

Last week a playground dad told me he wanted to make egg-free holiday cookies for us. I thought that was really nice, and it passed through my mind that this would be a good antidote to the party. I told Jesse he would be making egg-free cookies for us, and once again she skipped around a bit as a happy grin exploded onto her face. Then she stopped suddenly and stared at me, a puzzled look on her face. “Why?”

I didn’t know quite how to answer that. Because love and friendship and kindness and inclusion? I don’t know what motivates people. When I got the dish of cookies, I was startled to see that this friend had made four different types of egg-free cookies. Anthony and I shook our heads and picked dust out of our eyes. That’s a whole lot of love and friendship and kindness and inclusion. (Also, the cookies were delicious. Bonus.)

* * * * *

Jesse has been having some really great days at school. On one of the first of these days, about a month ago, her teacher gave her a little pendant. It’s a little piece of rough-beaten metal, and engraved on it is this: “brave is beautiful.”

Jesse told me that she almost cried when her teacher gave it to her, and she didn’t know why. I think I know why, but I didn’t say anything as I brushed those bits of dirt out of my eyes.

* * * * *

In this down year, I have been picked up and dusted off again and again by friend and family and stranger and colleague. I can’t tell all the stories without being a bore. As I rifle through the memories, I can only reach one conclusion: people don’t suck as bad as I think they do. If we could just keep giving each other simple gifts, maybe together we can hold onto enough humanity to keep going, and we can build that humanity into a wall of courage, and we can take that wall and push it up against all the ugliness that’s trying to rip our world apart.

 

 

this is what well-managed Tourettic OCD looks like (I think)

I’m hustling around the kitchen doing weekday morning things. Coffee, tea, toast, meds, cereal, sausages, tortillas, yogurt, chopped peaches and oranges, leftover taco fixings, balogna, cookies, snacks, and so on.

In the midst of my personal hubbub, Jesse says something.

“I pulled down my pants in the hallway yesterday.”

Oh.

No need to stop doing what I’m doing; we know this is a tic, maybe based in obsessions and maybe not, but it doesn’t really matter.  “Did you feel good about yourself afterwards?”

“No.”

“Were you embarrassed?”

“Not really. There was no one around.”

“How did you feel?”

“Relieved.”

“Would you have done it if anyone was around?”

“No.”

“What would you have done instead?”

“Controlled it.”

Awesome kid, I think. I mention something about all of this showing really good judgment and really good choices.

That’s right: I tell my daughter she made a good choice by pulling down her pants in an empty hallway at school.

Then we chat about how this is pretty much the same issue as picking your nose in public.

* * * * *

There was a whole lot of shit going down in that little conversation.

One, it was a rare example of me actually getting it right as a parent (I think). My heart didn’t flinch or cringe when Jesse brought it up, and I think I didn’t over-react. I didn’t feel sad or angry or unhappy. It felt like simple information-sharing. I remembered that Jesse was telling me about it because she needed to share, not because she was rubbing it in my face. I asked questions instead of nattering.

Two, Jesse was articulating very clearly what it feels like to vent a tic or compulsion (I think): RELIEF. I use a lot of analogies to explain it, depending on my audience. Like holding in a fart or a burp that’s just busting to come out, or even worse, like holding in the loosie-goosies when you’re standing in a long line at the store. Like needing to stretch that crippling cramp in your thigh. Like trying not to cough when you really have to. Like not crying out in pain when someone closes a door on your finger. Like not blinking. Like holding vomit in. You can do it for a while, but in the end the only relief is through release. You gotta let that fart out eventually, whether it’s a silent-deadly or a Wagnerian ripper.

Three, Jesse was describing in miniature a healthy balance between control and relief (I think). A little person with tics and obsessions can’t always control them. It’s just too much. So she has to let them out sometimes, or else she’ll be swallowed alive by the effort at control, and the obsession will fill every fiber of her body right down to the sub-cellular level, and then there’s just no hope. The only question is whether the release happens in a safe place  and in a safe way. Jesse made that happen yesterday, all on her own.

* * * * *

Shortly after our little chat, Jesse left for school. I didn’t send her off with a hortatory, finger-wagging lecture about self-control and competing responses. I am so sick of that shit right now. Instead, I sent her to school with a kiss on her forehead and a Christmas cookie in her hand. She was grinning, and I can’t wait to see her when I pick her up this afternoon.

Maybe she’ll pull down her pants today again; maybe she won’t. Maybe she’ll make it to a safe place; maybe she won’t. But I know she’s trying, because she told me so and I actually listened. That’s pretty outstanding for an eleven-year-old kid and her fifty-year-old mama (I think).

 

 

The IEP meeting didn’t suck

I attended Jesse’s IEP (“Individualized Education Plan”) meeting yesterday. It was such a great way to start the week. Who doesn’t look forward to an IEP meeting on a Monday morning?

Jesse qualifies for an IEP and special ed intervention because of “emotional and behavioral disturbances,” or EBD. It’s a cruel set of words, a sorry label to bear in order to get necessary support, a vicious artifact of the continuing stigma attaching to mental health issues.

I can’t imagine describing someone with a physical disability these days as having, say,  “mobility disturbances.” How about “intellectual disturbances”? “Attentional disturbances”?

But as far as I can tell, it’s the label we have to attach to Jesse in order for her to qualify for assistance through the special ed system.

What Jesse does have, before we reach for the EBD label, is some specific — albeit broad — mental health challenges. Generalized anxiety, probably depression, OCD, Tourette’s or tics.

We have to call them mental illnesses, because that’s how the DSM describes them. I would love it if we could label at least the OCD or the Tourette’s a developmental disability. It seems to be a lot easier to get support when you have a “disability” than when you have a “mental illness.” I’ve been whining about this for a while now, and I admit I’m getting tired of myself, but let me get it off my chest again. Jesse’s disorders have a lot in common with autism and ADHD — stuff like disinhibited behavior or impulsivity, social miscuing, getting stuck, obsessive thinking, repetitive behaviors — and it’s not a newsflash that there’s a lot of co-morbidity.  But two are called developmental disabilities and two are called mental illnesses. A DD is a better passport to services than a mental illness, so Jesse didn’t hit the right jackpot.

Instead of saying EBD is how Jesse qualifies for support, I would rather say almost anything else. I would rather see a category called “pain in the ass (PITA).” I would rather see a category called “belongs to Crazy Nation (not otherwise specified) (BCN-NOS).” (I would pronounce it “bacon nose.”)  I would rather see a category called “drives us crazy (DUC).” I would rather see a category called “jaw-dropping inappropriate behaviors (J-DIBs).” I would rather see a category called “what the hell happened to you?? (WHY).”

Jesse has had anxiety and OCD since she was a wee little thing, but it’s only when she fell off  the cliff behaviorally that she qualified for an IEP (or at least, before we thought about getting her one). That’s lame. EBD my ass.

* * * * *

I’ve gone off the rails here. I’m supposed to be talking about Jesse’s IEP meeting. Right. So this year I did something I’ve never done before. I filled out a “positive student profile.”

This whole “positive” thing is not something that comes naturally to me, and I’ve always found it strange to plan on going into an IEP meeting with the mindset of talking about how awesome the child is. The only reason we’re there is because the child is not so awesome, right? Because there’s something not going right, something that’s messed up, some failure or flaw that’s making the child so unsuccessful at school that she needs intervention. In that context, what’s the point of talking about all the good things that don’t require intervention? It feels like hot air.

In other words, I’ve been an incredible stinker in IEP meetings.

But I finally gave in and wrote a positive profile. It was so hard. The questions on the form I decided to use were so broad and banal. Who is Jesse?  What are her strengths? What are her greatest challenges? What are our hopes and dreams for her?

It was like walking into a bad interview.

But I gritted my teeth and  got to writing. As I wrote, I noticed that these human questions — so different from medical inquiries — were driving my language in a different direction. It wasn’t just semantics. I found myself thinking  about Jesse not as a diseased child, laboring under the behavioral challenges of mental illness, but as any other little person trying to make her way through life.  I found myself spending very few words on the disorders giving rise to her IEP needs.

With Jesse’s input and guidance, I wrote this in response to the question, “Who is Jesse?”

Jesse is a typical kid who wants friendships and connection. She wants to be part of the community and experiences her classmates share. At the same time, Jesse is profoundly independent. She is exactly who she is, and she isn’t inclined to change her interests, her looks, or her behaviors just to please others and fit in. We love that independent spirit.

Jesse has always been full of curiosity and a deep sense of wonder about the world. She loves to be outdoors — to feel mud between her toes, dirt under her fingernails, sea salt in her hair, and snow drops on her nose. She has always loved the wind. Even as a newborn, she would lift her face to a gale wind and close her eyes in pure delight. This simple delight in natural experiences has never changed; Jesse learns through real sensory experiences. She learns best through application — not just by rote or in a book, but experientially through observation and contact.

Jesse sees herself as an explorer, an artist, a writer, and an earth scientist. She likes to be silly and to make other children laugh. She is a thoughtful and kind big sister, who has always shared her life, her time, and all her stuff with her little brother, with an open heart and few regrets.

I set it aside and came back to it later in the day. It felt like a goofy puff piece, a sophomoric and one-dimensional description of my complex child. But I realized too that I was setting the stage for a conversation with Jesse’s team at school — a conversation that should start with who she is and what she needs to inspire her, not a conversation about the educational establishment’s needs. And frankly, I kind of liked this vision of Jesse. She’s a pretty cool kid.

Maybe the positive student profile wasn’t such a stupid exercise after all.

When I got to the question about Jesse’s greatest challenges, I gave her carte blanche to identify them for herself. She didn’t hesitate, so it was pretty clear to me that she’s been thinking about this a lot. One, she wants to be able to eat lunch in the cafeteria with the other kids. Two, she doesn’t want to need help anymore; instead she wants to be the helper.

It occurred to me that this was a sea change in our conversation. For more than a year, our big-ticket goals have been almost exclusively about symptoms of her mental illness — reducing tics and submission to obsessive thinking, controlling her body and mouth, feeling and expressing less anxiety. These changes in behavior certainly matter, but they had swallowed us alive and become an end in themselves, without reference to the general quality of Jesse’s life.

But Jesse’s articulation of her challenges reflected her basic human needs for inclusion and community. She nailed it. Eating lunch in the cafeteria is something Jesse has never done. The clamor, the social complexities, the yelling cafeteria monitors, Jesse’s fear that she’ll screw up behaviorally, and her terrible phobia about having contact with eggs and dying (real and severe allergy, but exaggerated fear) — it’s a lot for her to deal with. But she’s missing out on one of the only communal moments in a school day, which is not a small thing, and it would do her much good to be able to join her peers for a meal every day. And replacing her own neediness with someone else’s was an extraordinary proposition, one that left me with tingles. My child is telling me she’s ready to be the boss of herself, and built into her idea is the profound insight that she can do that best by supporting others.

I told my brother Mark about Jesse’s wishes. His reaction was harsh. “She doesn’t eat lunch with her classmates??” I felt defensive and I explained that it’s been her choice all along. Sort of. Anyway, after I stopped sputtering about it, Mark pointed out the basic truth of Jesse’s goals. “Jesse wants to make friends,” he remarked. “That’s great!”

The last question on the positive student profile asked about “our dreams” for Jesse in the short and long terms. Uuuugh, such a horrifying question. But I went at it anyway. I felt like a sledge hammer:

In the short term, we would simply like Jesse to be able to attend school full time without being overwhelmed by anxiety and tics and self-loathing. We believe that when this happens, she will blossom into academic achievement and social success.

In the long term, we envision Jesse pursuing an independent, brave life. She values her ability to stand up for herself and others, and she dreams of eventually finding a job where she can help people and animals. While these are the simpler dreams of a child, we hear her saying in a broader sense that she dreams of being a champion and advocate for those who cannot speak for themselves. We believe her own experiences in facing the challenges created by her invisible disabilities will empower her in this journey, if we let them.

So dopey. Sooo not cynical. Sooooo optimistic.

Sooooooooo not me.

Except it kind of is, I guess. I do believe every word of that. I’m just not used to saying it out loud.

* * * * *

Being a very pulled together parent, I finished writing this positive student profile thing the night before the IEP meeting and emailed it out to Jesse’s team at school. A little late. I brought a copy to the meeting the next day with a photo of Jesse attached, just like the form told me to do. (See? I can be compliant sometimes.) I picked this photo, because Jesse is outdoors and happy and sassy:

IMG_2218.JPG

Jesse liked the pic, but she was startled as she looked at this sun-kissed face. “Where have all my freckles gone??”

 

You live in Wisconsin, my friend. There are few freckles to be had in winter, and even less vitamin D.

Writing the profile flipped everything in my mind as I went into the IEP meeting. I didn’t walk in with the question, “How do we fix things?” Instead, I found myself thinking a whole different set of questions, in which Jesse was the client, not the victim nor yet the criminal. How do we serve Jesse’s interests? How do we maximize her experience? How do we accommodate her needs?

I had planned for some debate and possible conflict. Is what you’re proposing meant to serve Jesse’s needs or institutional needs? Can we stop calling Jesse non-compliant and defiant? Because those are kind of dirty words in the disability community. Is what you’re proposing respecting Jesse’s dignity and humanity?

I was prepared to advocate loudly for Jesse on these issues, but I didn’t need to go there. It turned out, Jesse’s team was already there with me. It  turns out that, as soon as I started whining about the over-therapying of her world last month, everyone made the U-turn with us. I got the feeling they were as relieved as me to stop using the stinking timer, stop demanding regimented responses, and start letting Jesse move about the world by herself, without an aide sticking to her six.

At our last team meeting, there had been much discussion of Jesse’s non-compliance and defiance. This was the same time when she was bottoming out at the tic clinic, and I had mentioned then to everyone that we might be taking her to a new therapist to explore the oppositional issues. In yesterday’s meeting, I admitted we hadn’t followed expert advice after all; in fact, we had backed off therapy completely. I said, somewhat pointedly, that we had decided to be non-compliant.

Jesse’s teacher smiled, winked at me, and gave me a thumbs up.

And it was all easy street from there. I learned that Jesse’s behavior is improving steadily, along with her mood. Our discussion revolved around the successful venture of giving Jesse back her dignity and her power to choose. Yes, we talked tangentially about her tics and emotions, and how best to manage them, but it wasn’t a bitter pill. It was just one part of her story.

Everyone is excited for Jesse. She is demonstrating real behavioral change. Maybe things won’t suck so bad for her in the months ahead.

The teachers on Jesse’s team — every one of them a warm, rich-hearted woman — looked optimistic and energized. They seemed well-pleased that they had been able to get rid of the weird interventions proposed by Rogers hospital; or perhaps more accurately, they were well-pleased that I had stopped insisting they use those interventions. Eek. They were back in command, doing what they already know how to do, which is to offer children in their care kindness and dignity.

I realized, as I looked around the room at that happy team, that it hasn’t just been Jesse regaining some of her dignity during the past month.