Question 33: When helping others I prefer to assist with physical tasks rather than offering counsel about their feelings. Fact: Yes. Truth: OMG, can we please stop obsessing about feels? It’s distracting and it keeps us from actually solving the Real Problems Of The World. I sometimes think that neurotypical life is centered around relieving the pain they’ve caused themselves, and all they really care about is making themselves comfortable, while their lives go to hell. Rearranging the chairs on the deck of a ship that’s not being steered… as it drifts right into an iceberg field. But hey, at least they have a good angle towards the sun, so they can work on that tan that will get them laid. Right?
LOL, nailed it. I will clean your house, do your dishes and even scrub your toilets, but having to talk through the everchanging emotional slush with someone peels my eyeballs like hard boiled eggs. I personally sifted it down to I suck as a friend, which I've blogged about a few times.
My absolute fave part of this last year on social media has been watching #oddizm rise up and conquer. Finally! About time, guys. I have a couple faves, and like me, they each keep a fleet of blogs. Unlike me, they are waaaayyyyy more prolific in the whole aspie/autie asplain-all-the-things stuff, which makes my self obsession look comparatively really mild, so emotional health context gives me an A+ there. And to be fair, one of them is a real doctor with intensity I envy, the other is an exceptional writer/reveiwer, so I'm actually feeling challenged by betters now, yay!
Regular readers know I'm a neurodiversity advocate, point blank. I don't just talk about autism or compare my pov to the world at large. I'm only here to tell a story, to take readers on my journey, a path I hacked through a jungle to a better place of understanding the ultimate question for the ultimate answer of 42, regardless and inclusive of all our points of views. Regular readers also know I'm a fan of the fans, and I love seeing all the cool stuff people do in their fandoms on the webs. I believe fandoms are what build cohesive communities of acceptance across borders and languages and neurodiversities. I believe the creators of content for entertainment are leading the way to a bigger, better world.
In the meantime, we all struggle with our own stuff, and the best way I've found to survive is to concentrate on myself and not other people. It's not my place to judge, but it is my place to be smart and share what I've learned. I am no one's tool, but I am a good tool wielder. I think the most important things I've learned in this lifetime are actual real forgiveness, actual real patience, and actual real charity. Not the fake stuff. It's very important that we drop the fake stuff, because that's what's messing us up inside. Having said that, going back to question 33 up there perfectly saying how I feel in autism spectrum point of view, I'd like to add that I actually do like humans and all their funny little ways, and y'all are doing fine as long as you can keep up a little courtesy and respect among yourselves. Also, lengthy blog posts are the same as obsessing about feels, so you understand the tongue in cheek part, right? Good. Some of us 'yap' a little differently than others, and I enjoy seeing other writers expound on thoughts I've had for years.
I'm also learning I myself don't need lots of words to say these things. My personal struggle is with summarizing and condensing, which I think I'm getting the hang of. 😊 Thank you for letting me practice on you guys. Those of you who've actually read every word I've ever written (there really are a few), bless your hearts.
How else do I say this. I believe in all of us arriving together to a more beautiful place. Hang on with me.
This week is hard, but I'm getting those shoes on.
I've apparently missed another big day here over the weekend, over 500 visits pretty much all at the same time from the same referral. Whatever is going on out there, yay! and always remember where your towel is, ok?
We had a big Bunny sleepover wherein I was up past midnight Saturday and then back up around 4 a.m. on Sunday, and good thing because she was back up before 6, and the entire visit was high gear high energy high speed ADHD. And then she went home to her mama and still zoomed circles around her. And hopefully this isn't connected, but last night she zoomed into a 102 temp and now she's got a tummy bug other people in her family had previously. So if I've been exposed, I'm hoping I get a big brain and energy boost from the viral invasion like she did before the croaking off part hits. *joking*
I actually dragged through pretty well, maybe the CPAP is helping. By the time she left here, I had all the dishes AND laundry ~caught up~. That's right, *caught* *up*. That's never happened before. Plus I was still able to hang out with her a little bit and cook and stuff, and that on 4 hours of sleep. But it was CPAP sleep. Keeping that OSAT above the 78 percents is a good thing. I still feel like I'm dragging, and here I am doing all this stuff.
By the way, @bonenado says working in clay and sand all day smelting into clay brick and glass blocks is NOT working (I keep that going in between doing stuff around the house), and I said It is if I write a post about it. So I hope to get a Mo Creatures post out later. I'll insert a cameo feature of another player that I thought was cool.
Since I've seen the Doctor Strange movie twice now, which, by the way, is a fantastically well done preamble to how he fits into the Marvel universe, I've been thinking a bit about arrogance. The focus in the story is that Stephen Strange is one of those 'beautiful brain' people with an eidetic memory, which made him the successful neurosurgeon he became. I think the audience might assume that because he's successful, he became arrogant, and that certainly seems the case as he is discussing which case to take next to keep his unblemished record going in his career. Because of this 'arrogance', he winds up wrecking his car and his life. BUT. That arrogance is what also winds up making him capable of saving the world, since he is able to look the biggest baddie right in the face without hesitation (and seemingly very little fear), and it took that kind of arrogance to be able to handle that situation.
I grew up outside of neurotypical norm, and I tend to notice the 'arrogant' people. They are my people. I love showing off when I'm right about something, or when I do something cool, and yes, I can come across myself as a very arrogant person. But I'd like to take a closer look.
When we have Bunny sleepovers, we feel a bit swooped over with tiny child activity, but one of my favorite things is when she wants to show us what she can do. Bunny is 3 1/2 and can do lots of stuff now, and she loves showing us what she learned in 'gynnasics' and how fast she can go or what she knows about drawing and TV shows and our phones... lol. She's a smart kid.
When I was a little girl, when I wanted to show visitors what I could do, I was told not to 'show off'. I was expected to be 'good' and 'behave'. I was so bad at interrupting conversations and doing things that wound up with me getting hurt that my parents had to really grind into me how important it is to be quiet and let other people do the talking while I behave quietly on the sidelines. These were not pleasant discussions.
I very quietly grew into a very smart and extremely arrogant person, quietly appointing those all around me as 'stupid' and 'slow'. Because I didn't grow up learning how to interact appropriately, I am still learning decades later how to interact appropriately. I'm about to say something really important.
Aren't kids supposed to show you what they can do? They're learning. Demonstrating and getting vital feedback are important and seem to be naturally built into little kids. Is arrogance born out of breaking this natural cycle?
If Stephen Strange was the typical neuroatypical, this likely started in early childhood. He was a little more than the people around him were able to juggle, and instead of embracing his natural skills and abilities, they fenced it off into behavioral problems. That alone stimulates atypical kids to try even harder to get positive attention somehow, and a lot of us wind up in academics. Stephen Strange is a great example (a bit exaggerated, yes) of how a different kind of mind can learn to channel itself into positive outcome.
Part of the Stephen Strange character set up is that he took an oath as a doctor, and he doesn't hesitate to try upholding that oath even if it costs him his life. I know a lot of people who are like that. They are really good at something, they step up into those roles, and they put their lives into thriving at what they do. A lot of those people, incidentally, are neuroatypical.
Note before I get started- I've trained my reader base not to comment because I'm easily triggered. New readers who don't see comments shouldn't misunderstand this as Pinky blog not having a solid readership. I usually leave comments on anyway, but am turning them off for this particular post for those who would use me as a springboard to launch into lengthy diatribe. This is Pinky's Haus.
I've been trying to put a finger on what exactly is specifically bothering me about the #actuallyautistic crowd suddenly blowing up twitter this last year, and after several months of sifting through tons of extremely lengthy explanatory posts by a number of people chock full of self discovery and the joy of finally sharing their noggins, it's dawning on me that they think they speak for other #actuallyautistic people in general.
One of the big brouhahas has been over whether we even need a spectrum label.
YES.
I am deeper on spectrum than the people in the posts I am reading. I never learned to mimic and hide my flaws because I never saw my flaws to begin with. I never even realized I don't fit in, much less how or why. I simply just saw everyone else around me as stupid, and I learned to dumb down and interact as efficiently and as little as possible. I never learned the social graces and I never, EVER learned to mimic them until quite late, and that with the help of a psychologist.
I'm not invalidating all the females finally finding their voices, and I'm #actuallyquitehappy that they're rising up.
However.
My frustration reading their lengthy self discoveries and sometimes excruciatingly detailed shares about every thought they ever had is that they realized they were different.
I didn't.
People TOLD me I was different. I heard that word so many times.
Here is the ugly truth about women and autism that you don't see in these other blogs- some of us are beaten into submission as children. (Some in history before us were institutionalized, and some even nowadays are sold all over the world as sex slaves.) Some of us grew up with abuse that makes doctors cringe when we start talking about it. Our parents didn't know any better.
So all your super lengthy #actuallyautistic autopsies over every little event in your lives sounds like whining to me. Don't get me wrong, I really am glad you found your voices. But I've been saying since 2008 that it's time to start being HONEST about who we are and how we feel, so this is not new. I feel like I'm suddenly being drowned out in a sea of clone posts about "this is who we really are". Um, not me, guys. Don't include me in your 'we'. (I have my own 'we'.)
One of the reasons I've gone silent on twitter is because 1-that is actually my natural instinct, and 2- neurodiverse advocates are lately being the ones likely to tangle with me over other labels I have. If WE are going to stick up for neurodiversity, then don't be stomping the ones you don't like flat in public venue. I have more than an autism label, and y'all make me sick.
I grew up between two fairly strict religious cultures clashing in my household. I was punished almost unceasingly at some points in my life for so many things most people take for granted as normal behavior even in normal children. Still, my differences were caught very early on. Ever since kindergarten I've been labeled with "Does not play well with others". My seat assignment was changed several times in both kindergarten and first grade. My first grade teacher begged my parents to get me to a psychiatrist. They didn't. That's how obvious I was, and I still. did. not. get. help.
The big deal with #actuallyautistic in girls nowadays is that these girls manage to blend in. I have never in my life blended in. Even when I think I'm blending in, I stand out like neon and everyone but me sees that.
So don't sweep me up and lump me into that big ol' #actuallyautistic category with all your own new definitions. Your experiences don't define mine. Your conclusions don't explain my life and my point of view. Your lengthy analyses don't HELP me. Maybe they help other women with #actuallymilderautism, and that's great. But I need the differentiations because I evidently have more problems and special needs considerations than some of you guys do. I feel invalidated and discounted every time an #actuallyautistic person proclaims just taking the spectrum out of the label.
I had a wonderful day out today, despite my resistance to leaving the house earlier this morning, as per my whining on twitter. I don't feel especially better or more capable, and my head is still a bit chaotic and the pain is kinda rumbling around looking for stuff to really DO, but overall, I'm actually in a fairly decent mood.
I know some of you still erroneously think I'm brave or something, but you don't see anything more than I tell you, and even though I've been way more honest than many of you will ever be about your lives (since it's going into a book, geez, it'll be out there anyway, right?), here are some details I haven't shared yet.
Now, keep in mind as you read the bullet points below that I am still an intelligent person capable of learning to effectively communicate and that it was my choice to share my head so that those of you who are caretakers and parents for people like me can understand a little more what's going on in our noggins. Also please keep in mind that I was born like this, grew up with this, and was forced to hide it and fake being 'normal'. If a messed up neuroatypical like me can successfully tackle life, I have faith in the rest of you hanging in there, too. The fibro is a given and I cinched that because it's pretty severe, but what carried the weight of the disability case was my 'mental illness' that I didn't even know I had.
This is straight from my disability papers, documentation of notes over time as noted by a panel of judges-
2007- Axis I clinical disorders of adjustment disorder with anxiety, axis II deferred but with narcissistic feature, axis V GAF of 60.
2008- depressed mood with congruent affect, Asperger's, GAF of 50. Note by panel "These impairments are not slight and have more than a minimal effect on the claimant's residual functional capacity found below. Consequently, they are "severe", as set forth" etc.
Long paragraph detailing exactly what I cannot handle in a work environment "and she lacks the capacity to respond appropriately to supervisors, coworkers, and usual work situations on a sustained basis." All my symptoms, both physical and mental, were considered consistent.
Ok, bottom line is I am autism spectrum with some personality and mood disorder issues that sometimes drop me into a 'needs supervision' category, meaning that I compulsively swing with my moods and obsess about death a lot and have a really weird sense of humor and barely hide my inability to play well with others, if I can hide it at all. Wow, I sound like twitter...
There are a LOT of us out there. We are not alone. Not all of us wind up on our faces in a legal hearing about our impairments and come out weeping and feeling like a total failure like I did because that happened after all the effort I put into being smart and strong and independent. I failed to hide it better. I failed to pass for normal. I. Wept. I was very sternly taught (with excessive punishment) to hide all that stuff, and I got so good at playing the survival game that I wound up wobbling my way into a degree, through a few jobs I never got fired from, and even still married after 23 years AND raising a stepkid to boot.
Mental illness isn't the end of the world. Being a mood swinging self harming on the edge of suicidal emo and/or death goth isn't *bad*.
We aredifferent.
And even though it doesn't feel like it 98% of the time, we're ok. We really are, because we care about other people even when we suck and act like we don't, we cry when life hurts even when no one ever sees it, and every single day we make the decision to be here, and that makes what we do in the world around us that much more important, because being here means we change history.
It's easy for me to go get lost in minecraft or whatever else I'm writing on or stuff around the house, but while I'm thinking of it, I just want to let you guys know that if I can so utterly fail as a human being (I turned down an interstate drug run offer from a drug lord, not because I could lose my kid, but because sooner or later I'd logically wind up in jail, so I'm the first to admit I'm not the best mom in the world) and still turn out ok, you can too.
This is a continuation from the nuts before Christmas- part 1, part 2, and part 3. I ran my data plan out and couldn't get this really long HD vid loaded until it rolled over again, router refused to handle it.
If this is your first jump in, my family is ASD, and @bonenado's family is ADHD, so it was really interesting getting Bunny and Batman together in one house for the first time. Parts 1 and 2 were watching the kids acclimate by running around, part 3 was watching Bunny experiment on my dad (super young ADHD + super old ASD). Part 4 here is Batman retreating into the laundry room, which makes a really good cave for kids and pets who come into our house, and Bunny adjusting back down from the wild activity when he disappeared.
I've noticed with Bunny being super social (I'm not, I've had to adapt) that keeping a running dialogue with her works really well, and apparently Batman picked up on that and even adapted to it himself. Bunny has a much bigger vocabulary and was speaking in complete sentences by the time she turned 2 like her mama did (they're both 2 1/2 here), but Batman is more inward like his mama was at that age, and I don't remember her talking a lot with me until 3-4 years old, and anyone could tell when she didn't pay attention on purpose because she preferred being in her own little bubble. Bunny kind of walked in all over Batman's bubble because she wanted him to come back out and run with her again, and I got a kick out of how their communication signals crossed and then started smoothing out. I think this would be a great intro vid for child social psyche students. I felt kind of like a brain interface for awhile, but it's something I've become used to. I'm saying that last bit because the simplistic narration I use in the beginning actually annoys me silly (ASD), but it really does work when one can be patient enough to handle 20 minutes of interface adjustment, like I was doing here. My opinion is that neither barking orders nor interfering work well with neuro collisions, and that patience and narrative are key to same-paging, essentially lining up our brains. I can imagine teachers and daycare workers not having the time to apply this on more personal level, so I applaud programs that help begin integrating neuro atypicals together before they slam through the culture shock of suddenly going to school. I'm pro neurodiversity, and I believe all of us have talents and skills that we can find niches for.
A couple of days ago I mentioned a big hard day out with Bunny, and then on twitter yesterday I said pix coming, and here we go, after I say a couple things again.
I got a little lecture-y in that mention post about tears for a commercial. That commercial was a concocted fictional story designed to yank your chains so you'd spend money (with a nice cover agenda), and apparently it was a wild success. I've already done my crying, thank you. After going through being DPOA for my own parent in a nursing home for 5 years, I think that ad sucks because a little wave from a very long distance without a single word or touch is still pretty lame. An aging population not being 'visited' by family probably means there are some pretty full plates out there, and thank goodness there are programs and facilities in place to help us care for our aging parents.
What I'm about to show you is real life, and in the mention post I said I shut off my feels so I could handle the hard. Before we get started you need to understand why I said that. We have lots of experience in our family. My sister's oldest daughter grew up in and out of hospitals and finally died in one, and then she nearly lost her only other child several years later after a car hit her in a crosswalk and they reconstructed her leg (nearly lost it) and got her through some pretty sucky head trauma. Our Bunny's mama had a very terrible experience herself in a hospital and had to be transported across the state after a surgery accident, and she and @bonenado were there through Christmas with Sploit and I not knowing if they'd both make it home, so that was a sucky holiday for sure. I've visited the Cystic Fibrosis wing in a research/college hospital a couple of times, full of kids who get dropped off by parents for routine yearly 2-week 'maintenance' or more imminent needs and testing. For someone who's never actually been admitted to a hospital despite having heart surgery (outpatient, believe it or not) and the plethora of miseries I've suffered (including a really bad car accident), I'm very familiar and even comfortable in them because I visit them so much. I even say in Explaining Depression- "If I had the stamina, I'd be volunteering at one of the hospitals, because I love hospitals and feel safe there. I've spent so much time in hospitals hanging out with other people that they feel like home to me, even though I've never been hospitalized myself." By the way, I don't watch hospital shows on TV. My fave part to hate on in hospital room scenes is the character ripping or taking the IV out without any blood spurting around or even applying pressure or covering up that spot, and then just walking right out. I once accidentally tore an IV out and blood so thoroughly shot all over the room and everything in it that I felt like I was the star in a horror film. What is the point of realistic filming if IV scenes are so blown off, yea verily.
Just a quickie for people still feeling teary-eyed or even guilty over the 'man on the moon' ad- take a book, take your knitting or ipad, pack nibblies in a lunchbox, pack activities for kids, and plan on hanging out for awhile when you go visit old people in their home or care facility. You don't have to talk and make eye contact that whole time (it's hard for some older people to talk anyway), you don't have to 'do stuff' for them, just show up and hang around, take a break and walk around, eat in the cafeteria with them (or by their bedside), and when you say goodbye, just say you'll try to come back soon. Very simple, no pressure. If you think you'll have a hard time, take xanax or something before you go. I had a very hard time with it. I actually fled the building a few times feeling very sick. Make yourself psychologically comfortable with a little help (don't go in drunk, guys), and just be yourself hanging out. My mom's care facility had a resident cat that creeped the hallways and visited all the rooms, and a bird cage, and a fenced 'back yard' with a bench and a big tree, and even a small lending library with books and magazines (another idea for charity- donate books and magazines to nursing homes!!!), and a giant fish tank. If you're stuck for a charity idea this year, go poke around a local nursing home. And take socks.
Ok, back to Bunny. I haven't been saying much, but we've been watching a little problem for several months, and now we're going through steps making sure other bigger problems aren't going on. She's ok. Not out of the woods yet, but passed one of the bigger tests with flying colors.
Things are so different nowadays. When I was a kid, medical tests in a hospital were way more traumatic. Kids were treated very differently, barked at to behave, and then parents were frowned on if the kids were nervous or afraid. I was a screamer (#aspienado), but I also had a very controlling parent, so when I had a barium enema at around 5 or 6 years old, I did what I was told but the trauma was almost inexcusable, and I certainly wasn't reassured in any form before, during, or after. (Bunny had a different test, but still invasive.)
having a toy to bite on while waiting is good
Bunny's experience was very different. She was allowed to be a real person, spoken to like a real person, given time to process and understand requests, and was handled by empathetic adults all around. The tech told Bunny's mama she was the quietest 2 year old they'd ever had (as in not screamy) and I believe the reason is because she trusts her mama so completely. Circus baby (yowza, that post looks like it's been invaded with viral ads or something) is one example of a full blown ADHD person raising a full blown ADHD baby. We are strong advocates for neurodiversity (I have Aspergers) and it shows in how well Bunny behaves in new and sometimes scary situations.
As scary as medical stuff is (I have outstanding anxiety around MRIs and stuff), nowadays we are surrounded, for the most part, by people who are much more empathetic and very well trained, and all the stuff we go through is to make sure we can be as healthy as possible, no matter what is going on with us.
The waiting room is hard, too. I brought stuff to do, but I got a little silly. If I hadn't been on the very edge of my phone plan, I probably would've been tweeting. I was surprised how quickly they got done, and next thing you know, there's a Bunny telling me c'mon, let's go.
She even got a little baby to take with her. No one ever gave me a little baby after stuff like that when I was a kid.
The best part about hospitals nowadays is gift shops and coffee shops and places to hang out that feel more like a mall or something. I know it's hard for some parents to allow a child to feel like they have some control in public situations, especially if you're not sure what they'll do, but I've become very comfortable with 'busy' little people. You just hafta get in busy gear along with them and keep up. Once they own their space, they get over stuff real fast.
Grampa couldn't be there, but we knew he'd have picked out this penguin. He really likes penguins.
Second breakfast, like a Hobbit. I heard she ate 2 pancakes before I picked them up, and now look at her go! (Even during a tooth coming in, wow.) Big stuff makes a person hungry. Hospital cafeterias rock, I don't care what anyone says. I've eaten many meals in 'canteen'.
And then it all catches up and we get tired.
That penguin looks like a second child.
The older doctor who ordered this test was very kind, like a grampa doctor, but he had ordered sedation for this test, which would have required driving to the university hospital in Columbia. @bonenado and I were all for this plan after the traumas we've been through as kids during medical testing and stuff. However, Bunny's mama talked to a nurse who does this test all day on kids and she advised against sedation for several reasons (sedation complications outweighing trauma problems), and after being told she'd be allowed in, went ahead and scheduled for local, which would be much less stressful for her because work and other things. After listening to her research and knowing she'd be there where Bunny could see her and know her mama would see what she's going through (since a child that young can't verbalize and communicate fear later when memories come up), I was ok with it, too, and tagged along for support. I really and truly believe the worst things adults do to children is tell them to shut up or be still during fear and nerves, and then not walk them through the emotional process. I touched base a little about how shut down I was as a child and what I'm still working on with a psychologist in hybrid- how robots go on. I think a lot of adults around my age range are having midlife crises because of traumas they never effectively or successfully processed as children, and that leads to feeling helpless and powerless as adults and consequently making bigger emotional demands on other adults, leading to divorces and all kinds of other things. We are all broken.
I am very proud of my Twink (Bunny's mama) for being so patient with her kiddo and making the world better for her. It actually turned out to be a good day. This is me taking them to the back side of the parking lot because I got the closer spot.
After that we split up, and now I have other pix.
Despite going through one of the most brilliant and longest lasting autumns we've had in years, I've gotten very few pictures, after years of being obsessed with photographing autumn. So I grabbed a shot while I was driving, lol. Now I don't feel like I missed autumn. I made a much bigger deal about it last year.
A guy @bonenado works with makes wine, and this is made from my sister's blueberry field.
I really miss being able to tweet pix from my phone, I used to do that a lot. @bonenado and I got a rare day out yesterday, went to town super early and hung out piddling and running errands for a few hours. He's a big Hot Wheels collector, so I wind up looking through them, too, and I can't get over how silly the licensing has gotten. Really? Can you imagine Lexx Hot Wheels? I mean, at this point, I'd love to see anything merched with Lexx on it, it would mean something's actually happening with the property. Oh, well.
Then we wandered around several Christmas shops in the stores we visited. This one would be perfect for #latenightmovie gang.
And this is just cute.
No, we didn't buy any new ornaments. EXCEPT. We found a matching robot, so now we have a @bonenado robot to go with Pinky robot that we found a few years ago.
I know some of you really hate early Christmas music. After YEARS of refusing to even listen to Christmas music, I'm finally in a little bit of a mood again. Still twisted, but it's kinda back.
