“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.

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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.”

IMG_3630

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.

IMG_3620

Here’s the wall starting to go in:

IMG_3627

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.

IMG_3633

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

IMG_3622IMG_3637IMG_3639IMG_3649

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.

IMG_3659

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.

IMG_3712IMG_3711

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.

IMG_3719

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.

First grade is for the perfect birds 

 

Let me just say this up front, before I move on to complaining: I pink-puffy-heart the public schools my kids attend. Our school district is incredibly diverse for Wisconsin, both economically and racially. Our teachers are mostly wonderful, and our experience with special ed has been better than it could have been. (This is a rousing endorsement, coming from me today.)

Teachers in Wisconsin’s public schools don’t feel especially loved these days by their state government, whose Republican leaders tend to create the impression they think PS teachers are whiny spoiled brats and lazy overpaid bums working in schools that are overwhelmingly failing because of a lack of competition from private schools, which problem can magically be fixed by vouchers.

I’m not buying it. I know our PS teachers are using their own money to make up for gaps in school budgets for much-needed supplies in their classrooms. I know they work overtime without compensation, because I see the odd hours at which they send out emails to parents. On weekends. I know how engaged they are with the curriculum. I know how they have loved my kids. They are not whiny babies, and they are not overpaid, and they are decidedly not spoiled.

I also know that public schools don’t suck and aren’t failing. Maybe some are, but in general public schools are doing great and are seriously under appreciated. A thriving public school system is, in many ways, the beating heart of a successful democracy, a great institution that helps create a well-informed, literate voting population. Hypothetically.

Anyway, I’m a supporter of our PS teachers, period.

So understand that my complaints here are about early education models, not about my school system or public schools or my kids’ teachers. These are hard times for PS teachers. I don’t want to pile on.

(Except now I will.)

* * * *

I’ve been hearing on and off all year from Nick about a sliding-scale behavior chart they use in first grade. Nick — an otherwise cheerful and well-adjusted young laddie — was very apprehensive about it at first. He told me last fall that there was a big chart in the classroom with every student’s name on it. Next to each name was a sliding marker on a color scale. If you screwed up, your marker slid down the scale to a bad color. If you didn’t screw up, you stayed at the top on a good color.

I was a little shocked, skeptical even. It sounds a lot like public shaming, like a new iteration of the dunce-cap model. I thought we don’t public-shame our kids anymore.

I asked about a bit and learned the entire first grade team uses this system. I intended to visit the classroom and check it out, and inquire and wheedle about it, but I became complacent quickly. Why? Because Nick is a compliant, hardworking, easy-going kid who handles himself really well at school. After years of Jesse’s struggles, it’s easy for me to be lazy about Nick, whose needs are far less immediate and intense and obvious.

But then last week this came home.

It made me really, really grumpy.

* * * * *

I generally hate color-coded rating scales. Remember when the Homeland Security color chart came out after 9/11?

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I made so much fun of that, living in Washington, D.C. where we felt unsafe every day for a long time after 9/11. There was something stupid about the color-coded system. The different categories felt arbitrary, filling me with meaningless rhetorical questions that distracted me from my job. What is, after all, the difference between a “high risk” and a “significant risk”? And why in that order? Doesn’t “significant” belong above “high”? Why do three of the five categories include the same word in the header and description, but “guarded” goes with “general” and “elevated” goes with “significant”? Why even have the category “guarded” (aka general)? Isn’t there always a general risk of terrorist attacks?

Head scratchers.

I felt the same way when I saw Nick’s behavior chart and the colors.

IMG_3290.jpg

I couldn’t stop the stupid questions.

Why is there any category higher than “ready to learn”? Doesn’t that seem like, I don’t know… the pinnacle of what we’re looking for in school? What more do you want from these little 6- and 7-year-olds, most of whom are still only barely capable of wiping their own butts after pooping?

What makes a choice good versus a great one? What’s outstanding? Why isn’t outstanding about choices too? Is it meant for the teacher’s pets, like some categorical recognition that you are generally an amazing person regardless of the choices you make?

Why is there a tattle category? Or maybe it’s better to think of it as the nuclear option category, the grown up equivalent of “I’M TELL YOUR MOMMY!” Why isn’t the tattle built into the top of the scale too? Don’t I deserve to be contacted if my kid is “outstanding”? (which, you will note, Nick apparently is, la la la la.)

What silly person picked the colors? Why is PINK outstanding and RED super bad? Pink, after all, is simply white-diluted bled-out red. Is there some secret, insidious, gendered message contained in that choice? I noticed that the color progression follows the rainbow, except one color is missing. Why replace indigo-in-the-middle with pink-on-top?   Every modern rainbow has seven colors, one of which is indigo. Look:

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People really need to commit to a thing and do it right. If you’re going rainbow, just GO FULL RAINBOW. Otherwise, you’re just confusing the kids.

* * * * *

After I failed to get over the color coding, my eyes fell to the “Behavior Codes.” I don’t understand. They’re not codes. They’re a top-eleven (why? why?) list of all the (apparently) worst things kids can do at school.

I scanned the list and finally understood something I’ve been struggling with all year.  When I pick up the kids from school, I like to ask questions like, “Tell me something good you did at school today.” I’ve worried because Nick either can’t or won’t answer that question. He typically shrugs, makes “I have no idea” eyebrows, and runs off to pretend sticks are alien laser-shooting weapons. But he’s always ready to tell me about the tiny ways he messed up.

And now I get it. If I asked Nick what he did wrong, he’d have a ready answer. The school has provided him a handy list of fails by which to measure his days.

More questions stacked up. Nick has told me you can slide up and down the color chart through the day. It’s constant surveillance. But how do you go up or down?  How do the behavior codes translate to the color chart? Is there a counting and adding and subtracting system? Do some fails move you more on the scale than others? Is  it arbitrary and secret, so the kids have no real idea how their behaviors will affect their color? What if you were out of your seat for a good reason, like you were about to vomit and you ran out of the room? What if you save a life by doing CPR? Does that make up for a whole mountain of bad and put you on perma-pink? What if you “misbehaved” (don’t really know what that means without more information, if you have social cuing issues like me) because you have a mental health challenge? Does it still count? Do you get sent down the color scale, or do you get a modification? Does that need to be in an IEP? Does a parent need to formally request a 504 accommodation?

I stared at the chart and behavior codes and tried to slow my racing thoughts, and then a bit of an ache touched my heart. Imagine what this sort of plan does to a kid with severe anxiety, or the extreme-moral-self-judging down side of OCD, or ADHD, or a variety of behavior challenges or home situations that make this stuff hard. Imagine a kid who’s looking for direction on how to behave, not how not to behave. She won’t find it on this list.

I thought of my Jesse in first grade. I think they had a similar system in place, but I was too exhausted from other issues to pay any attention.  Jesse would have been paralyzed in the face of this sort of behavior chart, until she would have exploded in raging fits. Which is pretty much what she did. It would have been an exquisite torture. She would have wandered over to that chart every day and volunteered herself right down to red, in a desperate attempt to be free of the overwhelming, unachievable task of staying good. She would have obsessed on all the ways she could screw the pooch, those thoughts filling her head thunderously until all her self-control was drowned in the noise and she tic’ed her way down the bloody scale. Being on red would have satisfied her, allowing her to discard the dissonance of hating herself while seeing evidence that someone else didn’t think she sucked completely.

I sat back and shook my head. How do we end up here as adults? How do we convince ourselves that these are good ideas? I’m not judging, mind you. I’m the fool who made a behavior chart for Jesse, just last year, that started with “do what you’re told, when you’re told to do it.”

It would be so easy to fix the negativity embraced by this first grade chart. You just flip it to the positive, and see where it takes you.

I stayed in my seat.
I waited my turn to talk.
I followed directions.
I was respectful.
I behaved well.
I helped a friend.
I was kind.
I was fair.

And so on. Kids would have behaviors to shoot for, instead of behaviors to avoid. They might become more aware of all the good things they do, rather than the bad. I think it’s easier to strive than to avoid, even if striving is hard. I think most of us would prefer to climb a steep mountain than to walk through a minefield. Why would we ask anything else of our children?

I have no doubt that most of our elementary school’s teachers actually focus on positives in the classroom (or else how would you ever make it back up the blessed sliding scale?). I know Nick’s teacher seems to be flexible and realistic about what kids can accomplish at this age. I wish the first grade team could just put that attitude on the chart to send home.

* * * * *

The kicker on this list, the thing that made me tell Nick I don’t care what color shows up on it, ever, was the note to the parents.

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Parents are only invited to talk about the chart with their kids in cases of failure.

I consider that limited exhortation a full-on system failure.

Parents should be invited to talk about the chart with their kids no matter what. Why in the world would we only focus on what’s negative? If your kid’s coming home PINK every day, doesn’t she deserve a hefty back-pat? I’m not talking about false praise or puffery. I’m talking about reinforcing behaviors we value.

What if we replaced that parental directive with something like this:

Please talk with your child about what color day he had. Ask him what he did right, and what mistakes he made. Talk with him about how positive  behaviors make school more fun and help him learn better.

* * * * *

Jesse came out of school today telling me about some pretty gnarly stuff she did. Definitely in the red zone for a fifth grader. I told her it was unacceptable, and I was a bit of a wanker. At least while she screamed at me and kicked the back of my seat in the car, I didn’t scream back; but I failed to dig for any deeper story. After we picked Nick up, Jesse innocently started telling me about a break dancer who came to school today to do a presentation. Among other things, he was doing the crotch grab-and-grind that Michael Jackson popularized.

Ah. Of course.  There was a reason her obsessions with sexuality had bubbled up. I should have hunted first, instead of just assuming she had let things get out of hand today through lack of effort. She didn’t just go to the red zone; she was ushered there as well, by the school, however inadvertently.

So if I was queen, I would add this to the parental exhortation, in fine print somewhere on that stupid calendar, because I wish someone had said it to me when Jesse was in first grade, so that I could have been a better parent to her. I wish someone would keep saying it to me now:

If your child had a bad day, STOP. Take a breath before you react. Before you get suspicious, angry, or disappointed, before you punish her, before you natter at her… Give her a hug, a kiss, and a snack. Tell her you love her, and nothing will ever change that. Ask her if she’s okay. Ask her to tell you her side. Recognize that every peer in her classroom knows she had a red day, and that is humiliating. Sure, discipline her, have a consequence, whatever. But also help her pick up the pieces. Help her find courage to go back and try again. Tell her about the things she does right.

Tell her she’ll always be pink to you.

 

I did it again (reflections on the joys of mediocre advocacy)

Last week I had my first private conversation ever with an elected official who represents me.  It was terrifying at first and I had an anxiety attack, but everything turned out “okay,” even though she’s a Republican and I’m a Democrat.

Whaaaa?

I know, crazy talk.

So I did it again on Monday. Last week it was by telephone, but this week… He came to my house. Eek.

It meant I actually had to clean up. It was a hefty price to pay to engage in mediocre advocacy, but I was willing to make the sacrifice of having clean floors, cleared surfaces, dust-free furniture, and an absence of mildly gross smells in the kitchen.

This time my assembly rep, Dan Knodle, came over. He actually agreed to come to my house! He wanted to come in the afternoon, his aide told me. I explained the situation in basic terms to make sure Dan knew what he was stepping into: two potentially feral children in the house. He said it was okay.

I prepared the kids over the weekend. In particular, I made sure Jesse knew and was on board about us discussing her mental health journey through the school system. Some of the conversation might be painful for her.

She said yes. Also, she insisted on calling him “Mr. K-noodle.” So did Nick. Much giggling ensued.

I prepared for the worst.

* * * * *

At 4:30 p.m. on Monday, a clean-cut, straight-backed, snappy-casual gentleman knocked on my kitchen door. Definitely a politician. I was nervous, of course, and feeling significant anxiety. But then in stepped Dan and I realized I was on terra firma, my own kingdom, the place where I am the boss of all things. I felt good. It occurred to me that Dan has some courage to visit strangers, albeit constituents, in their homes.

Any stranger who comes into my house with an agenda of any kind is immediately at a disadvantage, because the very first thing you have to do is take off your shoes. I try to be nice about it, but Americans like their shoes. With Dan I said something like, “We have a strictly shoe free house. Would you mind taking off your shoes? If you’re not comfortable with that, it’s okay, but also you could put on my husband’s slippers to be more comfortable.”

Awkward.

I invited Dan in and suggested we stay in the kitchen, because the furniture in our living room is beyond disgusting, thanks to the existence of children. And there we sat in my kitchen and talked, for a full hour.

 

It was a sprawling conversation, but I only want to tell you about the important things.

* * * * *

Dan arrived with very little idea of what I wanted to chat about. So I gave him a copy of the mental health initiative that’s in Governor Walker’s budget. Six million dollars to provide staff training and to increase mental health services on school campuses. Dan took it in like a good Republican: “This is new money.”

Yup, I said, it’s new money. It’ll probably require a new employee in the Department of Public Instruction (DPI). And it’s really important that we spend the money, though I would prefer a “zero” after the “six.”

I’m not sure he thought that was funny.

In fact, he said he wasn’t aware of the provision at all until I brought it to his attention.

GOOOOOOOOOOOL, screamed a tiny voice inside my brain. I just scored a tiny point, because the first voice Dan was going to hear about this initiative was mine, and the first story he was going to hear about it was Jesse’s. I never underestimate the power of a first mover advantage.

* * * * *

What followed was a long discussion about how children with mental health challenges are, as I sometimes say, the bottom dwellers of school intervention, relegated to the counselor’s office as disciplinary problems and truants. Teachers frequently don’t even know what clues to look for to identify basic symptoms of common disorders like anxiety, OCD, tic disorders, and depression — let alone how to work with them in a classroom setting. And there’s still this wall of stigma, which leads people to believe that “developmental disabilities” are things schools can address, but “mental illnesses” are best left to the private medical sector.

I made my big picture pitch. When it comes to disabilities, the broad arc of history in our public schools has been one of expanding inclusion and comprehension. We used to exclude pretty much everyone with differences from “regular” classrooms and schools. But now we have this growing awareness that schools can and should, through well-trained staff and in collaboration with parents, ensure a robust and inclusive education for people with physical disabilities, birth defects, developmental disabilities, learning disabilities, and a wide range of differences. My kids’ school system commonly and confidently provides supports to students with a ton of different issues.

So why should we not provide the same confident supports to people with mental illnesses? Why can’t we start to see those as “disabilities” as well? They are, after all, lifelong conditions that people have to learn to cope with, live with, deal with, just like any other disability. We’re not asking schools to treat mental illnesses through teaching staff, but rather to do the same thing they do for other disabilities: provide supports, develop accommodations and modifications, show compassion and understanding, refer children to private therapy if that’s appropriate.

I think I got a little excited. I discovered I was leaning forward in my chair toward Dan (I hope I didn’t get in his personal space, because he would be too polite to tell me). My arms were flapping around in big arcs, apparently to demonstrate my vision of expanding services for children. I think I was getting bug-eyed.

Dan expressed some surprise.  He apparently had not been aware that mental illnesses like Jesse’s aren’t viewed as “developmental disabilities” and don’t provide as good a passport to services.

GOOOOOOOOOL!! Screamed something inside me. I just scored another tiny point.

I taught my representative something. It wasn’t because I’m an amazing advocate. It’s just because we were talking, and he was listening, and he asked the right questions. All I had to do was take the chance of answering them.

Dan, a Republican, shared his thoughts about how spending money like this on early interventions will likely cost the state less in the long run because of improvements in outcome for people at risk. Yes, Yes, I said. I, a Democrat, shared my thoughts on how lucky Jesse is to have well-to-do and well-educated parents who can  provide private supports and advocacy, and how I would like kids whose parents can’t provide those supports to still have as much success and support as my Jesse. Yes, yes, said Dan.

We were seeing the same coin from two sides. We connected, I think, on fundamentals.

* * * * *

As we wound things down, Dan offered me a couple eye-opening thoughts.

Now that he’s aware of this provision in the governor’s budget, if it ever comes up on the chopping block he’ll be able to say, “I have a constituent who cares very deeply about this budget item.” In his little list of budget issues, there’s a “K” for keep or a “P” for protect next to this item.

GOOOOOOOOOOOL!!

My tiny voice made that happen. How cool is that?

If and when this is voted in with the budget, he added (and he seemed to think it has a good chance of making it through), I would have homework to do. I could make sure my school district applies for a grant under the program that’ll be set up with this new money. If there were any hiccups, I could follow up with Dan and our state senator to ask for their assistance in the grant process.

I can do that?

Yes. Apparently, as a voter and constituent, I can. I actually have tiny power that goes along with my tiny voice.

What a concept.

* * * * *

I suspect I threw a whole lot of words and information at Dan, and maybe I got too excited at times, and sometimes I made no sense, and I was having a bad hair day, and maybe I was offensive? I don’t know, I really don’t.

Plus every five to ten minutes, one of my kids came into the kitchen with important matters for me to address.

“Mom, can I have a frozen yogurt?”

<Jesse drapes herself over my back and stares silently over my shoulder at Dan.>

“Mom, can I play with the Xbox?”

<Nick stands very close to Dan. I manage to blurt just in time, “You’re not allowed to jump on Mr. Knodle.”>

“Mom, I’m going to the basement so I won’t interrupt you. Okay? Can I do that?”

All of that makes me a pretty mediocre advocate and human being, I guess. But I still feel like I did the right thing, inviting Dan into my home, and taking time to tell him too many details about what’s on my mind when it comes to mental health issues. Someday maybe it’ll be something else, something more controversial or more important. But Dan and I know each other just a little now, and I hope we’ve laid a good first paving stone on our journey as representative-and-constituent.

We may just be two tiny voices in Wisconsin, but we’re listening and trying, and I have to give myself (and of course Dan) credit for that.

If you’ve ever had a pack of goldfinches land in your yard, then you know that it doesn’t take many tiny voices to make a beautiful noise. So whoever you are, reading this, if you haven’t done it already, go make your tiny voice heard. You might be pleasantly surprised by what happens, even in these challenging times.

The terrors of advocacy

Today I did something I’ve never done before: I spoke with an elected official to advocate about something I care about.

I experienced near-panic as the appointed time for the call approached. I sat with my notes, reviewing the budget item I wanted to talk about, going over my talking points, re-reading the material I had emailed ahead of time to my state senator. I fussed about the kitchen, remembering to get myself a glass of water in case I developed paralyzing dry-mouth during the call.

10:30 arrived and the call came in. I answered with trepidation, though I hope my voice didn’t shake too much.

It was the senator’s aide, calling to let me know the call would be delayed by 10 minutes.

Great. Ten more minutes to wallow in my terror. I sat still in my chair for a moment, filled not only with fear, but also with gratitude that the senator had been forced to turn my in-person meeting into a telephone call, because now as we talked, I could shake my legs wildly to vent my anxiety without her noticing. 

* * * * *

I was a piano geek from when I was really little, and a performance major in college. I spent my early years doing piano things — recitals, concerts with the local youth orchestra, accompanying gigs, money-making gigs where I played background music for events, early church services on Sundays, master classes, pretty intense competitions. Eventually I guess I habituated to a lot of the performance anxiety I experienced, though for big solo events I still had panic attacks accompanied by bouts of diarrhea.

Then I was a litigator for twelve years. I participated in mediations and arbitrations and jury trials and evidentiary hearings, took and defended depositions, made arguments to judges, met with mean partners and confused witnesses and scary opposing counsel, and did all sorts of other stuff that made me pretty darn anxious. I guess eventually I habituated to a lot of those terrors as well.

I’ve spent the last seven years advocating in various ways for Jesse in the school system and in extracurriculars and in the medical system. I meet with people, talk with people, share information with people, write emails and letters to people, argue with people, beg people for what Jesse needs. It all makes me anxious, but I’ve gotten used to the players and mostly we’ve developed collaborative relationships and it’s not so bad anymore.

You would think talking with my state senator on the phone for ten minutes would be no big deal.

But I feel a lot of generalized social anxiety just thinking about meeting with or calling any legislative peeps. I can’t explain it. It just is. Still, as the moment of this call approached, I was shocked to find that my mood was approaching full-on panic. It was BAD. My stomach churned. My heart rate was badly elevated. My skin crawled. My armpits started to smell. I was having trouble breathing. I paced around the house shaking out my arms and legs, and cracking my neck again and again.

* * * * *

So finally the actual  call came from my senator. I managed to pick up the phone without dropping it. I prepared myself for a call that would undoubtedly leave me feeling inadequate, thick-tongued, and foolish.

My state senator’s name is Alberta Darling. She’s the chair of the joint finance committee here in Wisconsin, which makes her very powerful indeed, and that makes me a lucky constituent.

I had already informed her scheduling aide what I wanted to talk about, which is a line item in Governor Scott Walker’s budget that proposes about $6 million to support school initiatives relating to mental health — basically training for screening, intervention and referral; and grant funding to help schools form collaborative relationships with local mental health providers so students can obtain services more easily. It’s not much, and it’s not enough, but it’s a start.

A couple days ago I had emailed the aide an article on mental health issues in children that ran last year in the  Milwaukee Magazine, in which Jesse was highlighted. I sent links to a couple blog posts of mine that touched on school issues Jesse has contended with. I just figured, why not do what professional advocates say we’re supposed to do, tell an authentic story that explains why something matters?

Senator Darling started right in on our call with, “I just want to tell you up front…”

I cringed in real time with the words, and I prepared to do battle.

But she didn’t go there. Instead, she told me she fully supports the proposal. She got Walker to increase the budget amount assigned to it. She gets it. She supports more funding for mental health services for children in schools. It’s a terrible problem. We need to help. I want to tell you that up front, she said, so you don’t think you need to convince me.

Huh.

Thank you, I said.

Then I waited for her to find an excuse to hang up quickly on me, since she didn’t need me to convince her.

But she didn’t go there. She just sort of… outwaited me. And listened. I told her how happy it would make Jesse to know that our senator understands how important mental health issues are for children. I went on for too long about how Jesse’s “mental illnesses” — Tourette’s and OCD — are poor passports to services, whereas closely related disabilities like ADHD and autism are good passports to services, and that’s not fair. I talked about how unfair it is that children with mental illnesses don’t have well-trained staff in schools to help identify issues and develop toolkits to support their needs, and that these kids are too often chalked off as disciplinary problems.

She listened. She asked questions. She clarified. She seemed to be taking notes.

She thanked me for my advocacy.

WTF?

She invited me to come testify at a joint finance committee hearing about my support for this budget item. Those hearings are zoos, all-day affairs with massive numbers of people lined up to have their short turn to be heard. I told her Jesse might like to testify, since  this is really her story. Senator Darling sounded delighted, and she suggested I let her aide know if we were coming so that she could anticipate us and invite us up earlier in the day to testify, instead of making Jesse wait around interminably.

WTF?

We wound up the call and said cordial good byes, and I sat back, relieved to find that I was still alive and still all of one piece, and also I hadn’t peed my pants.

* * * * *

So here’s the weird punch line: I, a lifelong Democrat, am planning to go testify at an open hearing in support of a hard-core Republican governor’s budget proposal to put $6 million new dollars into mental health initiatives in public and charter schools. My senator, also a hard-core Republican, supports the measure as well. And if it makes it through, I’m going to thank them.

WTF?

It occurs to me that one of the reasons I fear political advocacy is that it creates an internal dissonance in this overwhelmingly polarized, hyper-partisan age. We are either Democrats or Republicans, and any third or fourth option is meaningless. We’re like two feral packs of dogs, one on each side of a bottomless ravine, slavering and snarling at one another across an unconquerable divide.

But life isn’t so simple, and the broad range of issues we face — not only at the national level but also in our local communities — are too complicated to fit into a binary bracket. This is a time and place in American history where everyone not only deserves to be heard, but needs to be heard. There has to be value in speaking, and speaking, and speaking, as respectfully and persistently as we can, to the values and policies that matter to us as humans, not as Ds or Rs or Is. 

So I think I will accept the internal dissonance, because maybe it’s a fiction, and I’ll keep on calling and meeting with elected people, even if we disagree on a lot of issues. There are more nonpartisan issues in this world than we know, I’m thinking — we are, after all, human beings first, not political affiliations first. And as weird and awful as other people’s political positions may seem to me, I know it’s time for me to start looking for some basic shared values that underlie our different points of view. Because I know they’re there, those shared values. They have to be, or else we’re doomed. 

And here’s the thing. For me, political activism is about making the world better, for the future, for humanity, and for my children. I would throw myself in front of a freight train for my kids. I would exchange my life for theirs without a second thought. I would chew my own arm off if it meant a better life for my children. I would give up anything for them. 

I can also talk to my legislative representatives for them, despite my fears and social anxiety. It’s probably a better option than dying or chewing off limbs.