Blargh

I have things to say, I just can’t access them past all the rage. So, all I can really say is that with regard to myself, my son, and various other people that I love – I feel that our right to exist, to live, our worth as human beings is under attack by the government right now.

Shocker? Maybe, maybe not. I’ve just never felt it so keenly. I guess that says something about my own privilege.

Dear medical staff: can we have the stickers without the gendered assumptions, please?

Monkey’s favorite show right now is “Sofia the First.” He loves the flying horses and the woolly wombeast. He particularly loves Cedric the evil sorcerer, and the dude with the magic show who kidnaps Clover and renames him Mr. Cuddles. (Monkey’s stuffed bunny is now named “Mr Cuddles” and is forced into servitude multiple times a day.) He got really excited a few days ago when he saw Sofia in her purple dress on a puzzle at the library. He also loves to watch the songs from the movie “Moana” (he has a name for each song: “How Far I’ll Go” is “the pig”; “You’re Welcome” is “the big rock”).

So it bugs me when, as this morning, we are at a doctor’s appointment and the doctor or nurse, who is kindly fanning out a handful of stickers for Monkey to choose from, shuffles rapidly past the Sofia and Moana stickers and go straight to Ninja Turtles and Spiderman.

OK, maybe it’s not a big deal. They’re just stickers, right? But you know what, screw that, it IS a big deal. My 3 year old just went through an uncomfortable and scary procedure (which happens to him A LOT) and he should get to pick a sticker that he really wants, not what YOU (well meaning adult) think he should want. I mean, at least let him LOOK at the stickers you would show if he were a girl. Just show all the kids the same stickers! I’m sure there’s a little girl out there somewhere who loves Ninja Turtles and would be thrilled to have the sticker Monkey somewhat reluctantly took for lack of options.

I’m trying to come up with a quick, polite way of letting these medical professionals know that they need to show him the “girl” stickers too. I’m just not sure how to phrase it. I did speak up once, and Monkey delightedly chose, from a full drawer of stickers, one with Dora on it, which was his favorite show at the time.

This is 2017, folks. It’s not even about gender identity or sexuality at this point, it’s about acknowledging that human taste doesn’t fall into neat stereotypical boxes along arbitrary gender lines.

When I was little, I loved dinosaurs (still do). I put bows on my dinosaurs and made them marry each other. I played with a “boy” thing (dinosaurs) in a “girl” kind of way (weddings), just like Monkey enjoys a “girl” thing (Sofia) in a “boy” kind of way (evil magician). (Even these designations are arbitrary; I love a good evil magician as much as the next person.) But it doesn’t occur to companies to sell shirts with dinosaurs wearing bows in the girls’ section of the store, or with Cedric and his evil crow in the boys’. I can’t decide if this is prejudice, or capitalism, or a lack of imagination. Maybe all of the above.

Things that go bump in the night (weighted lap pads, health care bills)

Well, I’m back. Back from a refreshing, wonderful, not-long-enough vacation to – whatever this is. “Real life”?

Monkey did much better on this trip than the last one we took (which involved self-injurious meltdowns, regression and dehydration). This time, we were prepared. We brought a binder full of visual supports, headphones, an iPad with his favorite games and videos, fidgets, a weighted lap pad with farm animals on it.

The lap pad was very calming for him on the plane. Unfortunately, it had the opposite effect on the TSA agents. On our flight out, they searched my carry on, questioned me about it and then tested the lap pad for explosives. On our flight back, I removed it from the carry on before sending it through the scanner. They still questioned me and tested it for explosives. (Behold the terrifying object: Find Me Lap Pads) Despite the hassle, I will definitely bring it the next time we fly, because aside from lowering his stress level, it’s the ONLY thing that keeps Monkey from continually kicking the seat of the person in front of him.

I tried hard to avoid thinking about Monkey’s doctor’s appointments, therapies, etc, while on my vacation. However, I have been following the progress of the AHCA in the Senate and have been continuing my healthcare advocacy on and offline, contacting legislators, speaking with human rights organizations. I saw the footage of protestors being dragged out of their wheelchairs and carried away by police. That’s our future if we don’t fight back – except that, eventually, the cameras won’t be there. So, once again …

CALL YOUR SENATORS! Especially if they are Republicans. Tell them to vote NO on the AHCA.

I need a vacation.

Like, really really bad.

I’m beyond burned out. It feels kind of like depression, but it’s not, because if I spend a whole day sleeping I actually feel better afterwards. I keep starting things and then stopping them because I don’t have the energy to see them through. I don’t even have the energy to be effectively angry about the AHCA and all the other garbage the GOP is inflicting, or trying to inflict, on us.

Half the time I can’t remember what I’m doing. I know I’ve done some hilariously silly things lately – of the putting your keys in the refrigerator variety – but I can’t remember the specifics of what I did. So that’s not very funny.

What I know I’ve been doing – taking Monkey to doctor’s appointments and therapy and school evaluations, making complaints to the school district, scheduling more appointments, rescheduling them, grocery shopping and cooking (why do our bodies require so food so frequently? WHY???), deep cleaning the apartment (I seriously need a maid – I can pay exactly $0 per hour, anyone interested?) and of course making sure Monkey is washed, fed, medicated, clothed, intellectually stimulated etc. He just got his first pair of eye glasses, which look incredibly cute on him. We had a last-minute trip to the pediatrician today to try to decipher this cough he’s had for a while – to figure out which of his conditions might be causing it and whether it’s a serious one or not so much. He’s got a sedated MRI coming up. I can do all that stuff, I just have nothing left over. I’ve been dealing with my own health issues as well.

Fortunately, Monkey and his dad and I are going on a trip, very soon, to visit family. This means that for a while someone else will prepare my food and play with my child. It’s going to be fantastic. Maybe when I get back, I’ll have the mental energy to write a blog post about something other than how tired I am.

In the meantime, if you’re reading this and you DO have energy, PLEASE tell everyone you know how horrible the AHCA is. I’m not sure why the GOP is so determined to deprive kids like my son of decent medical care by segregating them into under-funded “high risk” pools; I suspect it has something to do with those big corporate tax cuts they’re handing out. Whatever the motivation, it’s not OK. It’s evil, actually.

So tell your senators, especially if they’re moderate Republicans. Yell at them for me, because I’m too tired right now to yell.

Optimism and misanthropy

For years, I’ve had arguments with myself about whether people are basically bad or basically good. Which side of me wins the argument has much to do with my current mood, but I’m never certain whether logic is on the side of the depressed me or the optimistic (possibly hypomanic) me.

I know what my therapist thinks. She thinks the optimistic me is right and the depressed me is delusional. I wish I could simply agree with her. The trouble is, the evidence often doesn’t support that.

On a personal, international, and historical level, the evidence is overwhelming that people are actually pretty horrible. Our particular talent seems to be taking something good and misusing it. Our legacy is one of slavery, war, increasingly creative ways to torture and kill each other, every conceivable kind of abuse, daily pettiness and selfishness, oppression based on whatever we can come up with (skin color, culture, language, gender, religion, illness or impairment, financial resources, circumstances of birth) and, finally, environmental destruction of the planet. And all of these things are totally unnecessary. You can argue that war is sometimes necessary, but until we are invaded by aliens, literally the only reason that war is or ever could be necessary is because people suck.

I come from a family in which there was inter-generational abuse. For much of my life I’ve been bullied, mocked, or simply excluded by peers and psychologically abused by people in positions of authority. (And my life has been pretty good!) And every time I let myself be optimistic that society is moving towards acceptance of those who are different, and think we’re making progress in understanding each other and listening to each other, I’ll read something on social media about how all those stupid liberals with their stupid identity politics need to just shut up and being bullied is good for kids because it keeps them from being weaklings (or whatever) and I just want to not be human anymore so that I don’t have to share a species with that person.

Despite all of this, there is a possibly insane, but improbably resilient, part of me that thinks the best of people, that believes they are basically well-meaning though damaged, that wants to like people and keeps seeking out engagement with them in hopes of proving the other part of me wrong. This is the part of me that forgives and asks for forgiveness because I’m not perfect either, that believes some kind of cosmic redemption is possible. This is the part of me that bothers with thoughts of a just society – whether that means a society that is incrementally better than what we have now, or an ideal anarchist society in which no one wields power or violence over anyone else.

The misanthropic part of me thinks anarchism is a bunch of bullshit. A power structure will always find a way to reemerge, as in communist countries. People will just kill each other like they always do.

The optimist in me says, “You’re not the only one that feels this way. There are others. People as imperfect as you, as angry as you, people stronger and smarter and more empathic than you, who are fighting injustice on all fronts because they haven’t given up hope that we can do better. Because they can’t afford to give up hope.”

I look at my son, and he’s just wonderful. I look at him and think, “How can people be bad?” But then I remember that as he grows up (if we haven’t all killed each other yet), he will be bullied and hurt and excluded by others, as I have been. Maybe much worse. And I try to find a category for all those people who hurt and bully others that’s narrower than the human race – a category that doesn’t include me.

But that category also has to leave out all the people I care about and empathize with and want to protect. So that they (we) can be the good ones. Victims, not perpetrators. The trouble is that I see the ways we’ve hurt others, too, knowingly or unknowingly, the ways we’ve participated in structures of abuse and domination. So then I start thinking, “But that’s not the same, this is worse than that, what I did isn’t like what that person did,” etc etc.

Or is it?

At various times, I’ve gone through mental gymnastics to explain to myself why I’m not like other people. Maybe I’m not really human at all, but some kind of elf! (This was Preteen Me.) Or witch! (This was Teenage Me.) Or visionary! (This was College Me.) It’s apparent to Adult Me that if I am any kind of elf, witch, or visionary, I am failing at my vocation miserably and in some very human ways.

Maybe, after all, we are all in this together. Maybe I, with my hurts and faults, am no more or less redeemable than anyone else.

How to lose a friend (when you have a child with special needs)

1) Start out with a baby with unexplained delays. Befriend a mom whose baby also has unexplained delays. Talk a lot about your babies and their delays.

2) Live in affordable housing, in an apartment that’s not big enough to put all your stuff away even on those days when you have the energy to try. Make your living space look like a disorganized hospital by lining up oxygen tanks in the entryway and hanging nasal cannulas off chairs.

3) Find ways for your child to be in the hospital a lot; it interferes with scheduling play dates, and also makes your friend feel obligated to care even after the novelty has worn off (like, really? the hospital again?). Ideally, this should start happening right around the time that your friend’s child is outgrowing her delays and needing fewer services. It also helps if you can get a few new, unexpected diagnoses during this period to stress over and talk about in detail.

4) Share hilarious anecdotes, like how you once splashed yourself in the face with your child’s lymph fluid while emptying Jackson-Pratt drains. (Also a great way to avoid making new friends, should you find yourself in a group of moms.)

5) Keep venting about therapists, doctors, DMEs, and your concerns about your child’s development, while your friend has nothing to say in that area because her child is basically typical now and this stuff is no longer a significant part of her life.

6) Try to convince yourself she’s not passive aggressively telling you something when she cancels play dates at the last minute “because she has to do laundry”, or leaves food on your doorstep after you get back from the hospital instead of coming in. Keep texting her to ask how she’s doing and if she wants to get together, even though you’re always the one initiating it. Let your suspicion and resentment simmer quietly.

7) Stop texting her for a while because you are completely overwhelmed with illness, ER visits, pediatrician visits, another sleep study, trying to get your child to tolerate a nebulizer (no really, it’s an octopus!), trying to figure out the whole process of transitioning from early intervention to preschool, and scheduling two different autism evaluations because the people from the first place stopped calling you back and still haven’t given you a date. Notice in some part of your subconscious that she hasn’t commented on any of your medical updates on Facebook, even when your son was in the ER on Christmas Eve.

8) Ask how she’s doing. When she doesn’t respond within ten minutes, ask if she’s ignoring you.

9) Get a lecture about how you haven’t been contacting her either, and how she’s been really busy with buying a house in an upscale neighborhood so her daughter can go to the best preschool.

10) Drawing on months of carefully controlled, slow-simmering resentment, say something sarcastic implying that your life is harder than hers. Be told that you’re a crap friend because all you talk about is your child’s medical issues and she doesn’t want to hear it.

11) Completely explode. Use profanity. Be as insulting and mean as you possibly can. It’ll feel good for about 10 seconds. Maybe a full minute. Make sure there’s no possible way she’ll ever want to hear from you again.

12) Take a benzo so you can settle the adrenalin enough to get some sleep, because you’re touring the special needs preschool in the morning. Feel guilty and analyze the reasons why you’re a horrible person.

13) Realize that you should have let the friendship die quietly months ago, and the main reason you didn’t was because it was your only shot at play dates for your socially challenged son.

14) Decide to do better next time.

Trust me, this works really well. I think it might actually be impossible to keep a friend if you faithfully follow all these steps. Good luck!

Evidence that Daniel Tiger’s Neighborhood is really an anarchist commune disguised as a constitutional monarchy

Monkey’s favorite show is Daniel Tiger’s Neighborhood, the animated spin-off of Mister Rogers. He watches it a lot. Thus I also watch it a lot. As in, I have entire episodes memorized down to the inflection of each sentence and I sing the songs absentmindedly in public restrooms.

In watching this show on a daily basis, I have noticed things that lead me, unavoidably, to the conclusion that despite the presence of King Friday and his royal family, the whole neighborhood actually operates on anarchist principles.

daniel-tiger-anarchist

1) There’s no money. Mom Tiger goes to the bakery and gets bread and leaves. No money exchanged. (There’s something like a cash register on the counter in the bakery, but nobody uses it and that thing looks seriously antique; Baker Aker probably keeps it around as a curiosity from one of those weird capitalist societies.) The whole family goes to a restaurant and there’s no bill. Daniel goes to the doctor and nobody is asking his mom for a copay first. I don’t think they even have library cards.

2) Free public transportation. (Also sentient. Bonus points.)

3) The Enchanted Garden is a communal vegetable garden and orchard where anyone can go to get free food at any time. There’s also a community farm where they keep the livestock and horses that anyone can ride.

4) There’s no janitor in the neighborhood, so presumably everyone – including the royal family, who can be seen sweeping walkways after a storm – does the deep cleaning stuff on a rotational basis. Further evidence for this is the song, “Cleaning up is a gift we give / To each other each day.”

5) Another song: “Everyone’s job is important! We all help in different ways.”

6) Another song: “If there’s something you need, try to make it yourself.” (Not good capitalism!)

7) All the jobs that would be minimum wage in a capitalist society (grocery store clerk, waiter, babysitter) are performed by Prince Tuesday. The royal family can be seen engaging in various mundane tasks such as cleaning, and King Friday’s only real role seems to be announcing holidays and the occasional community vote (more on this later).

8) They have an official holiday called Neighbor Day which is celebrated by performing random acts of kindness.

9) There are no police officers in the neighorhood. When Daniel fantasizes about being a police officer, all he does is hold a stop sign to help animals cross the street, which is proof that he’s been brought up with no conception of law-breaking or prison.

10) Unless Daniel’s parents are independently wealthy from an inheritance, there’s just no way that Dad Tiger could be supporting the whole family with his very part-time clock business. Even if he does export some of them to other towns, how much of an income does that really bring in? With Mom Tiger as a stay-at-home, how are they covering all the medical bills for Baby Margaret’s birth?

As far as I can tell, everyone contributes to the community by means of their job and basic maintenance of the communal spaces. So Dad Tiger makes clocks and does handyman stuff, Mom Tiger is a caregiver, X the Owl is the librarian and also in charge of the community recycling program, Teacher Harriet teaches and runs a community garden, Music Man Stan gives free music lessons and instrument repairs, Lady Elaine runs the factory, Mr McFeely is the mailman and resident pedophile who would be in jail just on the basis of his name if they had a jail, Henrietta Pussycat sings and dances at the local nightclub, King Friday and Queen Saturday take care of the administrative stuff and announcement making, and they all help with cleaning and gardening and such. In return, they all get the above-mentioned free transportation, free food, free childcare and school, free healthcare etc.

11) This one’s sort of the exception that proves the rule. In one episode, King Friday announces that the neighborhood is getting a new piece of playground equipment, and since the children are the ones who will use it, they will vote on whether they want a swing-set or a slide. Out comes the polling booth and tyranny of the majority, leaving the “losing” children disappointed and despondent …. And this would appear to contradict my whole theory.

BUT notice that it’s the children who are voting. No actual democracy or constitutional monarchy lets children vote. And the adults don’t vote at all. From this, I conclude that this is a teaching method: the gateway into individual and group decision-making for the children. As they grow up, having personally experienced the limitations of majority voting, they’ll be introduced to more sophisticated ways of making decisions as a community.

So there you have it. I let my child watch anarcho-communist propaganda on a daily basis.

And I feel good about it.