Ah, bureaucracy …

I once had a friend who joked that “bureaucracy” meant government by furniture. (Bureaus – get it?) I sometimes think that furniture might do a better job.

If you get any kind of government assistance, you get to see bureaucracy up close and personal. My son, because of his disability and our low income, receives SSI payments. Well, yesterday, I received four pieces of mail from Social Security and related agencies, telling me that he no longer qualified for SSI and that his Medicaid was being “terminated.”

Except not really. Because you see, next month, the paydays fall so that we get an extra paycheck, which puts us over the monthly income limit – just for one month. And his Medicaid isn’t really being terminated, there is a grace period and as soon as April rolls around and we are once again poor enough in the government’s eyes, I’m sure I will get the same number of pieces of mail telling me his Medicaid has been approved again. Oh, they will probably send me the whole welcome packet for his MCO all over again, too. They do that every time his Medicaid is reapproved.

And all of this will happen twice a year, because of how the paydays fall. Efficient? Um, no. Enough to give a person a heart attack the first time it happens? Yeah.

I’ve lost count of the number of times we’ve received notices telling us that something was terminated or our benefits had gone to $0, only to call and be told to disregard it. “Everybody’s getting that notice for some reason! Just ignore it.” OK, can I have the last hour of my life back?

Since we’re talking about SSI, the rules surrounding this program are just about enough to make nobody want to get SSI ever. There are rules like – Nobody can give you a gift card that can be used to purchase food or shelter. (Well, they can, you just have to report it as income.) Personally, I don’t know anywhere where you can purchase shelter with a gift card. But I’m glad the government is making sure those low-income disabled people don’t get one cent more than they deserve!

One of the many problems with capitalism is that, in order to have anything remotely resembling a humane society, it necessitates these kinds of government interventions in people’s lives. Socialism usually gets blamed for bureaucracy, but the thing is, a capitalist society with no SNAP or WIC or social security or TANF or Medicaid or Medicare or rent-controlled housing etc etc etc, is a society in which a lot of people DIE. It’s a society full of poverty and homelessness even greater than what we have.

And nobody really wants that. Homelessness and poverty are not aesthetically pleasing; they’re bad for business.

Like it or not, capitalism and bureaucracy are bedfellows.

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Holiday update

One of my posts has recently gotten some attention, which I’m glad about, because the subject – relations between parents and autistic people in the autism community – is something I care deeply about. Of course the attention also triggered my anxiety and paranoia, so I’ve been hiding. But thank you to everyone who has read, liked, reblogged, commented, and/or followed! You all rock.

The other reason I’ve been quiet is that ’tis the season of respiratory viruses, which means Monkey is having trouble with his breathing. We’ve been spending a lot of time in doctor’s offices and some in the ER. He is on some new medicines, so hopefully things will get better and not worse.

I have ideas for posts but they will have to wait until I have the mental energy to organize them. In the meantime …

Hope all of you have a wonderful time celebrating (or not celebrating) whichever holidays you celebrate (or don’t)! Life is fragile. Be well, friends. ❤

Not a fan of #MeToo

Trigger warning: Ironically, this post is about the need for trigger warnings.

My Facebook feed was flooded yesterday with “Me too” posts. Some had no details, others were graphic and triggering. Really the whole thing was triggering. I’m not sure what this campaign is going to do, other than trigger some already traumatized women to relive their experiences and/or become depressed. Or maybe it’s just me.

Yes, sexual abuse, harassment and assault is rampant. Why is the onus on women who’ve experienced these things, and survived them, to open up to the world about it in a very exposed, impersonal forum like Facebook or Twitter – possibly upsetting other survivors in the process? Who does that really help?

Don’t get me wrong. There’s bravery in sharing one’s story. There are survivors out there doing powerful advocacy work.

But this kind of viral media campaign isn’t that. Most of the women (and MEN – why aren’t male survivors being encouraged to join in?) who I personally know have complex PTSD from ongoing abuse, did not post, or simply copied and pasted the original post. Probably because to do more than that was too triggering. Or maybe they don’t want everyone to know what happened to them (and you know what? That’s OK too!).

Is it just me? I looked at my feed again this morning and immediately felt the panic and depression setting in …

Who is this helping? Who is it supposed to help?

And please, if you’re going to do this and post details, PUT A TRIGGER WARNING.

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.