#AutismAwarenessMonth

April is Autism Awareness Month, and I came across an adorable, joyful finger-painted meme that said "Autism is not a disability. It is different abilities." 

WTF?

I have two middle schoolers in my life who are on the autistic spectrum, which is kind of amazing since I have so few people in my life. 

My nephew often just comes across as an asshole. He speaks with a somewhat flat affect, like a bored Valley Girl, he paces restlessly around rooms, and he says totally insensitive and inappropriate shit that will one day get him punched, possibly even by a family member who knows and loves him and is aware of his condition. For example, he was having a complete meltdown one Saturday morning while I was visiting because...his braces were bothering him because one anchor wasn't perfectly centered between the top and bottom of his tooth. Note that he, even in his hysteria, admitted that he was not in pain. He stormed around the living room yelling and crying that he couldn't possible bear this for two years—he'd already had them for a month without a complaint—while three adults tried to help him distract himself from thinking about it. I finally lost all patience and sent him to his room when he screamed at his father, my brother, "I don't give a shit what you think." I was willing to humor his (entirely unnecessary) emotional turmoil up until he started abusing the other people in the room. He went to his room, calmed down a little, came back to perform his upset for us some more, then, not shockingly, he forgot about it for the rest of my visit because it wasn't painful, it was just something he was temporarily obsessing over. (Yes, for a child with ASD, it can be harder to ignore physical sensations or obsessive ideas, but it is possible, just like the rest of us do day in and day out, and like he had done for a month before ruining a Saturday morning for himself and his family before forgetting about it entirely.) He is an honor student, which is not surprising considering his intelligent, educated, involved parents, though he does have an Individual Education Plan with all sorts of accommodations since he is not very good at "executive function," things like paying attention even when he thinks class is boring; remembering that he needs to take his backpack, Chromebook, gym clothes, and pencils to school; and clicking "Submit" on Google classroom after he finishes an assignment. 

The other child I know is profoundly affected. He is also middle school-aged, but there is no mistaking him for anything approaching normal. He is mostly potty trained, but he still needs someone to check to make sure he has cleaned himself and not left the bathroom covered in pee or poop. He is on powerful anti-psychotics during the day to keep him calm and sleeping pills at night to keep in bed, and they don't always work. He too has meltdowns, pacing back and forth, moaning incoherently, and throwing himself on the ground, kicking the floor, which is quite alarming as he is now taller than I am and outweighs me. However, he does not have the communication skills of even a pre-schooler to articulate his state of mind: he has a receptive and expressive vocabulary of several hundred words, but he cannot put them together coherently, and he cannot carry on any sort of two-way conversation beyond confirming or denying simple requests. 

    "Do you want some dinner?" 
    "chickenfrenchfries."  

He can read a little and write and type on his tablet a little, usually but not always enough to find the children's videos on YouTube that he wants to watch at a hectic, chaotic clip. He attends a school for children with special needs, as he would be entirely disruptive to a normal classroom and would not benefit from being included in one. He needs very specialized one-on-one attention to stay on task with even the simplest assignments. He cannot be left alone for an afternoon, will never be able to hold down a job, never be able to live independently. He is the very definition of permanently, totally disabled. 

The idea that these two boys have the same condition, even as an umbrella term, is so absurd. One needs some behavioral therapy, accommodation, and understanding, and the other needs permanent long-term care. That's quite a "spectrum." Neither of them has any sort of special savant talent that can be nurtured and become the basis of a fulfilling, successful life. There is no Sheldon Cooper trade-off of social skills for genius or artistic talent. 

They say that if you know one autistic child, all it means in that you know one autistic child because nothing can be extrapolated from one to the others, but I know two, one at each end of that very broad spectrum. Neither of their conditions has any sort of up-side, and both of their sets of parents would be utterly delighted if their difficult, suffering kids suddenly woke up one morning as totally, boringly neurotypical. 

So whoever these people are who enjoy their autism spectrum disorder and its "different abilities" and want it celebrated, I cannot even imagine. 

Thoughts on "Young Adult" Fiction

To this day, my favorite job ever was working as a data entry clerk. I spent 20 hours a week while I was in college and grad school typing in the metadata for books in the general interest section of the ASUC bookstore, which meant I spent 20 hours a week leafing through catalogs of books for both academics and a lay audience, including an extensive section of children's books. 

Some time between then and now—I'm sure the internet could tell me but I don't feel like looking it up—the publishing industry invented the category "young adult" or YA, for short. They are books meant for ages from tweens to actual young adults. The books are often genre bending stories that might otherwise be difficult to shelve in a brick-and-mortar store.  In the US at least, the fact that they are marketed to minors means you can talk about murder, torture, and all manner of horrifying dystopia—so long as nobody fucks. 

One of my enduring interests is the way that the culture views sex. People hit puberty an average of five years before they become legal adults in the US, and there is a peculiar, self-contradicting obsession with the sexuality of people who are biologically capable of sex and reproduction, but not yet legally or emotionally mature. In the interest of protecting them—quite necessarily!—from an evidently inexhaustible supply of Republica—uh, predators, the reaction is often to pretend like they are always and forever victims who do not have agency or libido. I often wonder whether the adults who cry about 17-year-old children* being exploited remember what it was to be 14 and horny. And if they don't, if they are in the position of never ever talking and listening to their own pubescent offspring. 

A response to the criticism that YA fiction contains no sex has been to say that children's books are not FOR adults, and so should not contain sex. The children and their books should be left to their chaste innocence.

Allow me to retort: Maggie told me she knew of a cadre of girls who had made a pact to lose their virginity—at the eighth grade semi-formal. Forget prom and the despicable movie 🐓Blockers. These girls were claiming to be set on—with absolutely NO practical probability of—having intercourse at 13. 

Please, tell me again about how "young adults" aren't interested in sex. 

FWIW, my child, who knows that her body belongs to her and her alone, and that sexual feelings are part of being human after a certain age that no one else can chose for you, wondered aloud if they were planning to do it in the backs of their parents' SUVs as they were being driven home, all being too young to drive themselves anywhere. 🙄

Naturally, none of this is to say that children do not need to be protected, but as with so much of life, everything is contextual. Fending off fundamental biological urges for five years is a lot to ask. Forty-five-year-olds scheming to get with perfectly legally-consenting 20-year-olds is kinda gross. A non damaging space somewhere in between would be ideal.

And all of this thinking on my part comes about because I am writing a book that would comfortably fit into the YA category—alternate history with a magical element—except that I will not back away from sexuality.

Eh. There are no more brick-and-mortar stores, so who cares where it would be shelved...

A Permanent Solution to Temporary Problems

This morning over coffee Antonio told me that Sarah's friend and schoolmate at Berklee tried to kill himself yesterday. Members of their group chat hadn't heard from him, so they walked over to his apartment only to find the police there. Danny Salazar had swallowed a bottle of pills and tried to hang himself. Over the course of the day, we found out that he would be ultimately successful. He was brain dead, and the doctors waited for his mother to arrive from Texas to take him off life support. 

It is indescribably devastating to imagine his mother's flight to Boston and her arrival at the hospital and at the bedside of a warm body that no longer contained her son, and to sit with it while the machines were turned off and ceased to keep its heart beating and its lungs filling, knowing that what was left was just flesh and that the child she had carried and loved beyond all rationality was irretrievably gone. My mind withdraws from imagining myself in her place, like a finger pulling back after accidentally brushing against a hot stove.

I never met Danny and I knew very little about him. He was a drummer. He had a crush on Sarah last semester, and when he met Antonio, he was full of bluster and casual, "playful" insults for Antonio, who could not even view him as a serious rival for Sarah's affection. Then he had an unreciprocated crush on another girl. Then another. He moved out of the dorms and into an apartment with friends. His band Archon Theory recorded a song—with irony worthy of Gen-X, it is called "Optimist"—and made it available to stream. They had scheduled a mini-tour of dates for performing live. 

I don't know what else was going on. Was he failing out of school? Was he unable to continue paying the tuition? Was he on medication that wasn't working? Or that he wasn't taking? Should he have been? 

I do know that every one of these amazing musical children—now young adults—is the product of years of effort and support from their families and teachers and coaches. The thousands upon thousands of dollars and hours that went into even the least talented of them, to end up at one of the most renowned music schools in the world, is staggering, and often worth every penny if it brings art and sometimes just joyful noise into the world with it.

And yet, Monday evening, it seemed to Danny that it was not enough to light whatever darkness he felt. He chose a permanent solution to what were only temporary problems. 

If he felt he wasn't a good enough musician, he could have practiced more—he was in school for music after all! If he was failing out of school, he could have worked harder. If working harder wasn't enough to pass his classes, he could have taken a leave of absence to improve enough to be ready for the curriculum. If he couldn't pay the exorbitant tuition, university education is not at all necessary, or even common, to being a rock musician. If a woman didn't like him back, there are 4 billion others. At 18—just barely beyond being a child!— and in reasonable health, the list of things that you are just impossibly too late to start and succeed at is quite short, limited mostly to "child prodigy" and many, but not all, elite sports. 

I have often said, with respect to suicide, that it is not my place to decide how much pain other people should be forced endure. But in this case, there were ways out that he did not take. Many different paths in life, medication, therapy. 

It is such an unnecessary tragedy.

Act III

As Antonio finishes out his program at community college and looks forward to transferring to Berklee College of Music this fall, and as we wait for answers from the last three universities that Maggie applied to—naturally the ones that she actually WANTS to attend—I am on the precipice of Act III of my life, and that is the hard one, evidently.

That’s number one. Number two is spend as much time working on the third act as you do on the first and second act combined. Most good screenplays and good movies fall apart in the third act. It needs to be better and more intricate.

— James Gunn (@JamesGunn) May 19, 2021

Eight months from now, my life may look entirely different. Both of my children will most likely be moved away, though in that halfway way that being "away at college" is not quite entirely gone. We may sell our house to pay ridiculous cost of private university tuition. Or we may sell the house to follow a new job, if the company we work for cannot be saved, despite Jose's Herculean effort to do so. I may need to get a full time job and spend the next 10–15 years paying the aforementioned tuition. Or I may finally get my shit together and start finishing and selling books and pay the tuition that way. 

all of my plans for the future involve me waking up tomorrow with a sudden sense of discipline and adherence to routine that i have never displayed even once in my life

— Rachel McCarthy James (@rmccarthyjames) October 21, 2020

Don't you hate it when the internet sees you so clearly?

Mommy (and Daddy) Wars

Before my children started school, the only moms I knew were stay-at-home moms like me. Even after they started school, I only knew stay-at-home moms because the all-important "working moms" were too busy being valuable members of society to volunteer at school where I might meet them. And now that my children are adults (or nearly so), I don't know many people who have small children, so the whole "working" vs. useless, unemployed mom doesn't come up much.

Except that now I have a job (sort of), and my coworker Like has a son, Mason, who has severe developmental disabilities and needs full-time care. Luke struggles with child care, particularly in the Age of COVID, and I had a very short, very illuminating conversation with him yesterday.

Luke's son was born around the same time as his coworker Andy's, and Andy's wife Chris took care of both boys when they were tiny. Chris was (reportedly) the first to notice that Mason was exhibiting developmentally delays. Around the time that the boys were two, Luke told me that Andy asked him to find other child care arrangements. I don't know how Andy made the request, but Luke believes the reason is because having his wife care for the other boy "cut into his (Andy's) free time." Please imagine all possible inflected bitterness in this statement. Luke actually called Andy a dick for—reading between the lines—wanting Chris to be able to take off the same vacation time that Andy did, even if Luke wanted childcare during that time. (Which is not to say that Andy wasn't a selfish dick in other ways—he most certainly was—but expecting Chris to schedule her life in order to raise the child that Luke and his wife Katie didn't want to take care of is pretty fucking selfish too.) 

I also wonder whether Chris, who was a social worker before the children came, felt unqualified or, quite understandably, unwilling to take on the difficult task of caring for a special needs child along side her own toddler. The only time she ever mentioned the situation to me, it was in passing to criticize Katie for being an indifferent mother who seemed insufficiently engaged with her son—leaving me pondering the days when ASD was called "cold mother syndrome." (Yes, I know absolutely that being a moderately crappy mother does not cause autism, but the head still tilted when I heard that archaic term.) Everyone has a price, but I doubt that Luke could possibly have paid me enough to take on the task of caring full-time for a child with severe developmental and behavioral issues—while also caring for my own dubiously neurotypical child. (Andy Junior was no day at the beach either.)

So Luke and Katie set about finding other childcare, which is challenging for parents of a neurotypical child, and much more so for a child with profound ASD. And of course, they referred to it as "preschool." Ten hours a day for a toddler is not preschool. It's daycare. And Luke bitched about how the "preschool" they found would provide "only" ten hours a day of care, which was impossible for people who work a full eight hours plus an hour lunch plus commute. So he was bitter that he was always late to work, and his wife was always late picking the boy up, and the daycare workers were always pissed that she was late. But "fuck them" because "they didn't work hard enough for it."

The expectation that someone should provide an 11 hour day's worth of safe, supportive, enriching care for any child, much less a small child with severe, violent behavioral disturbances, at a price substantially less than a minimum wage 40 hour workweek is INSANE!!!!! Which doesn't stop parents from expecting it and being angry when they don't get it.

When Mason became (properly) school-aged, hallelujah!, they got eight hours a day of free daycare—which seems to be the main reason people send their children to school because who the fuck needs to learn to...read and do math and learn history—and then his grandmother would get him off the school bus and watch him until one of his parents could get home. That went on until the pandemic struck and the school closed and the grandmother refused to take Mason for the whole 55 hour childcare workweek. So Luke and Katie were trading days "working from home," and I, idiot that I am, volunteered to watch Mason once a week to try to keep Luke at work for a few more hours so the ever-shrinking company that supported MY family as well could keep limping along. I did that until school re-started, then agreed to watch Mason twice a week in the afternoons because Grandma had discovered that she really enjoyed doing literally anything other than taking care of her disturbed grandson in the afternoons. 

Eventually, Luke got federal money to hire a care worker and asked me to take over every day for pay instead of a couple of times a week out of the goodness of my heart. I declined because I am DONE taking care of children. It turns out, I don't really like children, and I would not be a happy teacher or daycare worker. I volunteered to do it during a GLOBAL FUCKING PANDEMIC because sometimes you need to take one for the team, not because I really missed wiping butts and being a snack bitch to an ungrateful child. And I also declined because taking money from them would have shifted the dynamic of our relationship. They would have felt that I owed them something rather than the other way around, and I do not need money that badly. (And indeed, immediately after they found someone to take the job, Luke and Katie started bickering over her time as if it was a resource that belonged to them. Note also the expectation above that Chris should be available to care for Mason when Luke wanted, at the expense of when Andy wanted family vacations, a sense of entitlement that stems entirely from Luke's worship of paid employment.) 

I filled in a couple of times when his "respite care" worker (his common-law sister-in-law who would watch Mason for money but not for free) couldn't make it, but the first time I declined to take a shift, Luke stopped asking, and I haven't seen Mason since. I can't really say I miss it, and it is partially the bitterness that THEY THEMSELVES view this as a chore that someone should have to be paid to do, because most of his own family and hers won't volunteer to do it for free, either out of familial obligation or, like me, a sense of community responsibility, with the excuse that—cue the celestial chorus—"they all 😇WORK😇."

Now that the pandemic is well on its way, but not quite, to the level of endemic, Mason's special ed school keeps shutting down, or he specifically keeps being exposed and quarantined, causing major disruption to their childcare situation, more so than any normal schools. Luke was wondering whether it was due to lack of staffing, more stringent COVID guidelines, or a greater propensity on the part of the special needs children to be exposed, or their parents to test them and declare it. In any case this is a recurring inconvenience and irritation to Luke and Katie, which is what brought up childcare yesterday.

And I quietly refused to volunteer to watch Mason, in part because I am not going to increase my own and my family's exposure to COVID, but mostly because FUCK LUKE. 

I stayed home with my kids. It was a choice that cost our family nearly a million dollars in lost income. I changed my own kids' diapers, I kept them safe from their own recklessness, I taught them to read, helped them with homework, drove them to and from school and soccer and music lessons and playdates and birthday parties. I intensively parented my son out of what might have been a diagnosable behavioral disorder. I managed my daughter's endlessly demanding chronic illness until she was able to do it herself. I was present for them for nearly two decades and they are both about to go to elite universities. (Yes, part of that is luck that they were both healthy and at least close to "normal.") And as much as I love my children, my two decades of unrelenting WORK was hard and exhausting and draining in a way that is seldom acknowledged, and it HAD VALUE, even if I didn't get paid for it. 

And I am done enabling someone else who values childcare only insofar as it is a paid activity.

Tasteless Tasty Treats (Parenting Fail)

My mother started a Christmas tradition when I was three years old. She made elaborately decorated Santa cookies, cut from an intricate Tupperware cookie cutter then painted and frosted with piping bags and decorator tips. They are a whole production from a time before professional Instagram influencers made us all feel bad about our half-assed crafting. The magical mystery of eBay made it possible for me to buy my own thirty-year-old cookie cutter to do my cut-rate version of my mother's baking wizardry with my own kids now that we live on the opposite side of a continent from Grandma. I'm not the woman my mother is, but I can try.

This year, the kids invited friends over to make cookies with us, and it turns out that (SUPRISE!) teenagers are assholes, and if they have not been properly indoctrinated into a childhood tradition, and are not actively repressed, they will make it disturbing. 

It started amusingly enough last year with Antonio's girlfriend. When the black for Santa's boots and belt went awry, as happens occasionally, Sarah just went with it and created "Leather Santa." It was funny enough that I even sent a picture to my mom, who got a little chuckle out of it. This year, not content with a single accidental Leather Santa, we got fully intensional BDSM Santa, French Maid Santa, Lingerie Santa, Cut in Half at the Waist Santa, and from Maggie's friend Ingrid, Bleeding from the Eyes Santa.

And for once, I can confidently say that this was not MY parenting fail. I was not about to go all Karen on them and put a stop to it, but I can proudly say that my own children looked silently askance at the desecration of their innocent memories and unsuspecting pastries. My children know that they would not get in trouble for cursing or making risqué jokes—or cookies—and so there was no appeal, no drive to make something "dirty" out of a sweet activity from their earliest childhood. But children who are used to being chastised and constrained, who aren't allowed to use "bad" language or acknowledge their sexuality will act out, will run toward the forbidden when the binding loosens. It's why the freshman dorm is such a chaotic place. 

I will not need to worry that my kids will go wild when they are no longer under my roof. Antonio is the designated driver for his pothead* friends. Maggie keeps track of her flighty friend's class schedule and assignments. I unintentionally raised two people who are the moms of their respective friend groups. And so you can tell which Santa cookie MY child made:

*Thank you, Merriam-Webster for letting me know that pothead is not hyphenated. 

#whiteGirlProblems

 I've been taking singing lessons because I have wished I could sing since I was a teenager, and, well, what the fuck was stopping me?

Crippling self-doubt and an ugly voice, you say? OK, yes. 

BUT! I want to be able to sing, so I'm taking lessons, and I am practicing with faith (yeech) that I will eventually be able to sing in such a way that the kids' musical friends don't mock me when I do karaoke with Maggie when she's 21. (This is my stated goal.)

So I was BEYOND excited when my voice teacher suggested that we work an Adele song because she thinks it will suit my voice. I can learn to sing like Adele?!?!?! OMG, squeeeeeeeeeee!!!!! 

Coincidentally, the Friday after she said that, the new Adele album dropped, so guess what I did first thing Friday morning!

...

*sigh*

...

I don't like it.

I don't like half of what Adele is doing with her amazing voice. I know from singing lessons that that whole breath-y Ariana Grande thing is actually a singing flex because it takes a SHIT TON of air to make your voice sound like that. You have to waste a lot of air, so it's exceptionally hard to do. I still don't like it aesthetically. It's not "sexy." It's doesn't sound cool. It sounds weak and wishy-washy.

But what I really, really hate are the lyrics. They are "mature." And not in the fun, dirty, immature way that I like. They are based in Adele "doing the work" in therapy before, during, and after her divorce. 

Ugh.

I am so disgusted by the phrase "doing the work" with respect to therapy, as if you're doing the public a service. People generally don't deserve congratulations for doing things for themselves, which is what therapy is. You're spending time and money on yourself. OK. And you also bought a couture track suit. ...nerrrr... 

She got everything she could ever need in life in her early 20s, and so much more than most people ever get. All her dreams came true. And she's not happy. So in consequence, she wrote a whole album of excuses for the fact that she has been selfish and immature, with a dash of exploiting her son's reaction to her divorce? No thank you.

And after I had my negative reaction, I read that she had said she wasn't making the album for 14 year old girls, but for women in their 30s and 40s. Um. No. Not this woman in her 40s. 

I still deeply relate to #whiteGirlProblems, but I cannot related to her #richWhiteLadyProblems.