Hearing and Saying

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I don’t know where this month has gone. My life right now feels like a whirlwind.

Between spending 6 hours a week at a hospital getting saline infusions, making trips out to campus to finalize my fall semester, planning our trip to Kansas City for the Unitarian Universalist General Assembly, preparing for my in-laws’ visit in May, and starting an intense physical therapy protocol, I haven’t had time to breathe.

And breathing is important, or so I’m told.

Writing, too, has taken a set on the back burner. And it’s not like I don’t have ideas, I just can’t get them down before they fly out of my head.

So this isn’t a carefully planned and researched post about a facet of Autism. It’s not even one of my typical lists, with discussions and comparisons. No, this is a collection of the one thing that’s been sticking in my head these days: funny and/or ridiculous things I’ve said or heard recently.

“He sounded disappointed that the cat didn’t fit down the toilet?”

“Are you prepared to make your evil laugh?”

“Just because she didn’t pet you doesn’t mean you can hiss at her.”

“The bush is buzzing again. Must be April.”

“This sign is old. Irish people people objected to being compared to potatoes.”

“I can’t tolerate it orally”

“Buttons makes everything a bit more formal.”

“I need you to come touch Einstein’s face. NOW.”

“What, have the hipsters ruined hats for everyone now?”

“But if we end up there, can I ride a camel?”

So here we are. It’s funny the things that come out of our mouths somethings. I’m not an eavesdropper, but I definitely feel like I hear more of other peoples’ conversations than your average neurotypical. I like to chalk that up to hyper-hearing and a natural curiosity.

I hope that your week is filled with amusing conversations!

Three Wishes

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I’m walking along the beach, looking for sea glass, and doing my best to ignore the grains of sand that have worked their way into my shoes. I see something in the distance, glinting in the sunlight, and I dash forward, hoping to find more glass for my collection. As I reach for my treasure, I realize that it is a fully intact bottle, not the rough and tumble fragments I’ve been searching for. Bottle in hand, I try to clean the sand off the bottle, when it disappears with a POOF.

In front of me stands what I can only describe as a Man/Moose hybrid, and when I manage to drag my eyes away from his massive antlers, I see him gazing at me, expectantly.

“Well, what will it be?”

I have no idea what he’s talking about. I figure if I don’t respond, he’ll explain himself.

“I don’t have all day here, you know.”

I’ve lost my words. It figures that a fantastically magical being would render me non-verbal. I cross my fingers that he understands ASL, and I sign DON’T-UNDERSTAND.

With a great huff and shake of his head, he says “Your wishes. You have three. Use them wisely. ” Under his breath he adds “Ugh, mortals.”

Thanks to a childhood Special Interest in mythology, I know that genies are rarely benevolent. These tricksters never have your best interest in mind, and take joy in warping wishes. I know I will have to be careful.

One thing that I never understood about wishers in stories was why they never used their first wish to make sure their remaining one were granted accurately. I tell this to the Moose Man, and his eyebrows furrow.

“You would waste a wish like that? I know you, mortal, and you have too many problems to be wishing for precision. In fact, I’ll make you a deal. You use me to wish away the demons that plague you, I give you my word that I’ll stick to the spirit of the wishes.”

Demons? Can those antlers let him see something that I can’t? Am I infested? I feel itchy just thinking about it.

Before I make any decisions, I definitely need to know what he means by “demons.” Again I sign DON’T-UNDERSTAND.

“Your brain, it is different from those of other humans. It causes you pain from your senses, confusion from social interactions, and despair from living a world that is not meant for you. I can use your wishes to take all of that away- why would you wish for anything else?”

I am stunned. Does he not realize that by taking away the bad, he would take away the good as well? Yes, I experience sensory hell, but there is sensory heaven in my world tool. The joy from my special interests outweighs the struggles I have with things like socialization and executive dysfunction. And mostly importantly, changing how my brain works would change who I am. Who would wish for that?

I have to think carefully about my wishes. They need to be so clear that he can’t warp them, and they have to benefit not only me, but everyone in my community.

He paces and glares while I take my time, but eventually, I am happy with my choices. I turn back to him and say:

“I like who I am, and would never risk changing that. Here are my wishes, and I hope they reflect that.”

  1. I wish to be included in my own Advocacy. I know myself best. I know my needs and struggles, and I need to be considered an expert in the field of myself. We will never make progress unless we give precedence to the voices of personal experience.
  2. I wish for Accessibility. Many of the problems that I experience could be easily resolved by people willing to meet me in the middle. All people with disabilities would be able to accomplish more if more of an effort were made to see weaknesses and then find solutions to balance them out. It’s possible, and more of an effort needs to be made.
  3. Lastly, I wish for Acceptance. Everyone deserves to be respected for who they are, and no matter what their abilities are. I don’t want people to make pity-eyes at me, and I don’t want people to think that the way my brain works is a tragedy. I am who I am.

He looks and me solemnly, and after a few moments replies “As you wish.”

All around me, lights swirl around me, and when I’m practically surrounded, I hear another great POOF and

I wake up in my bed. Half asleep and bleary eyed, I try to remember the Moose Man, but all I can recall is his ignorance, and his massive antlers.

4 Feelings That Rock

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A few weeks ago I was having a really bad week, and I wrote a list entitled “4 Feels that Suck”. It was mostly a vent disguised as a post, and it was very therapeutic. But the universe craves balance, and I realized that I’d have to do a ‘good feelings’ post as soon as I was in a better mindset.

So here I am. I’m feeling a lot better mentally, thanks mostly to some necessary psych med adjustments, and while I’m still having trouble with things like anxiety and self confidence, I think I’m in a good enough place to talk about happy feelings.

I know that feelings that rock, like feelings that suck, aren’t universal, but these are some things that never fail to make me feel good!

1. Finishing a project: I feel like I have been deprived of this feeling lately, but I’m relieved to notice that I’m slowly starting to finish things again. For me, this applies to a lot of activities: Knitting, Reading, Crafts, etc. I even get it from blogging sometimes. It’s not usually a long-lasting feeling for me, which is okay, because it’s easy to achieve. I don’t have to knit an adult sized sweater to get the satisfaction of finishing. A chunky knit hat gives me the same feeling. And while getting to the end of a 1200 page novel (I’m looking at you, The Count of Monte Cristo) is really satisfying, so is reading a short illustrated young adult book (A Monster Calls) is just as good. I think that the act of completion is so satisfying is closure. While I’m in the middle of something it’s open and active in my brain, which is its own kind of satisfying, but once it’s done, I can wrap the whole experience up in a nice box and keep it with me forever. And once it’s wrapped, I now have space for a new project! And believe me, there’s always a new project.

2. Finding a new favorite: With all of the media out there these days, you’d think you’d be finding new show, books, movies, or games every other day. This has not been my experience. I suppose Sturgeon’s Law applies here: 90% of everything is crap. Especially the way Netflix, Amazon, and other services are chugging out media with what seems sometimes like little regard for quality. This is why finding something new feels so good for me. I can usually tell within one episode/chapter/play-through if something is going to hook me, and when it does? I get goosebumps. And not in a special interest way. I’m not obsessed, I don’t need to know everything about everything the author/actor/publisher has ever done. I don’t hunt don’t obscure trivia. I’m not thinking about it all the time. I’m just thoroughly enjoying something great. Right now, I’m loving a book called A Tale for the Time Being, a show on Netflix called Love Your Garden, and a two player card game called The Fox in the Forest. I know these things won’t stay new forever, but I’m enjoying them while they are, and I’m confident there will be more great new things to come.

3. Connecting: Now, stick with me here, because I know what you’re probably thinking. “But Meesh, don’t Autistic People notoriously have issues with connection?” Actually, maybe you’re not thinking that. I’ll leave it in just in case. But connection. Sometimes I think struggling to connect makes it so much better when it happens. That’s one of the things I love about the online communities that I’m part of- for whatever reason, I feel connected to not only to experiences I have with people, but to the entire community itself. And I think that’s pretty cool! I want to point out that when I talk about connection, I don’t only mean to other people. Personally I connect with animals, characters from TV shows and books, and a certain street sign that I’ve named Oliver. He’s lovely. Although Jess has asked my not to name inanimate objects any more. I get attached. I guess my point is, that no matter what makes you feel less alone, and like a part of something, it counts as connecting in my book. And unlike some things on this list that give short term happies, connecting to something can sustain your need to not be alone for weeks or months or years. It might not be in the front of your brain all the time, but you can pull it up whenever you want. Essentially, it’s hibernating. Like a badger. Also, did I use the word connect too much? It doesn’t even look like a word anymore. Sorry for that!

4. Knowing Who You Are: Ok guys, I’ve gotta tell you. Up until I was about 25, I really had no idea who I was. I didn’t really know what I liked, or how I felt, or what I wanted. I’m honestly surprised I survived that way as long as I did. Enter Autism. Now, I can’t credit my diagnosis for everything. I’d slowly been getting to know myself, and I think having a name to put to what was going on in my head was just the tipping point. I did so much research. I stopped living in my head and started having experiences. Because honestly, how do I know what my favorite flavor of ice cream is unless I’ve tried all 31 flavors? It’s mint chocolate chip, by the way. However, I’m not here to talk to you about ice cream. After much trial and error, much wailing and gnashing of teeth, I can say with 93.2% confidence that I know myself. And that is such a good feeling. I get warm fuzzies when I can defend something that I know that I love, and when I can explain to my therapist what’s going on in my head. I’ve learned to break down problems that I’m having so I can find solutions. I feel like the Sherlock Holmes of myself. Or maybe the Hercule Poirot. That man knows how to rock a mustache. I know that I’m not a detective, but that’s how I feel sometimes. I am Meesh: Self Detective!

Bonus TMI: Taking a really good shit: Oh my god, I can’t even describe how satisfying this is. I’m one of those people who deals with serious constipation, and it majorly affects my life. Let me go on a quick tangent to tell you this story:

When I was about 23, I started having serious pain in my neck and (left) shoulder. I put up with it for a few weeks, figuring that I’d probably pulled something, but eventually I had to make a doctor’s appointment, because I couldn’t stand the pain anymore. After talking through my symptoms with me, my doctor decided to x-ray my abdomen, and when she came into the room afterwards, she could barely keep a straight face. She announced, almost gleefully, that I was “full of shit”. Literally. Full. Of. Shit. My entire intestinal tract was full up, and was cause referred pain to my shoulder.

It’s only gone downhill since then. I’ve been on medication, which helps, but I’d forgotten how good a great bowel movement could be until I started having Fluid Therapy treatments recently. Turns out that with 2 liters of saline, even my awful gut can keep things moving. Within about an hour after my treatment, I having the best poop ever. I look forward to it every week. Please don’t judge…

So those are my top happy feelings (at least for this week), I hope you all experience your own happy feelings this week, and I’d like to leave you with a quote from Kurt Vonnegut.

“And I urge you to please notice when you are happy, and exclaim or murmur or think at some point: if this isn’t nice, I don’t know what is.”

90% Shameless Self Promotion

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I absolutely understand if you don’t click on this. Who wants to hear someone talk about themselves day in and day out? Except maybe bloggers…

Anyway, it’s April, which is Autism Acceptance Month, and I’ve been having some fun. My Etsy store is empty 90% of the time, but as April draws closer, I start feeling the pull to get creative. And I figure, I’ve got all this stuff that I think people might enjoy, so why not?

I’ll keeping the pitch simple here. My shop is open. Everything is under $5. 10% of anything I make goes to the Autistic Self Advocacy Network. Free shipping to the continental US, and 15% off if you spend more than $5.

So. If you have any need for cute stickers, pins, or worry stones, I’m your person.

Thank you for reading this far- I’m just going to leave you with a few pictures…

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Autism is not a tragedy

special interest

autisticat body

 

6 Word Stories Pt. 28

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If I’ve done nothing else this week, at least I’ll have put together this post. I’m still very tired- POTS is kicking my ass, as a few of the Stories imply. I’m trying to keep on schedule with friend and church and this blog, but I seem to be having poor luck. I miss my routine, but I can’t keep up with it right now, so I’m going to celebrate small victories like this!

Happy news, I registered for classes to pursue a Bachelor’s Degree. I’ve been out of school for more than 5 years, so I’m a little nervous, but very excited!

So here they are, 7 6 Word Stories:

  • Watched a season in one day.
  • I started today with negative spoons.
  • That feeling after finishing a project.
  • Running water never fails to soothe.
  • I’d rather hide than make decisions
  • I’m only tired when it’s inconvenient
  • My chronic illness is chronically exhausting

Hope you all have a nice weekend, St. Louis weather says it’ll either snow, or be in the seventies, so wish us luck.

Autism Acceptance Education Acrostic

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It’s April again, and here we are kicking off Autism Acceptance Month! Calling it Acceptance Month instead of Awareness month may confuse people who are outside of the Neurodivergent community, but I think that this provides a great opportunity for education.

So, since I never miss a chance to make poetry here is an Acrostic poem with education in mind.

Autism Acceptance Education Acrostic

Autism is a neurological variation in functioning, not a illness, a disease, or a tragedy.

Curing Autism is not the goal of Autistic people. We want Accessibility and Acceptance.

Communities can promote inclusivity by listening to Autistic people about their needs.

Eugenics works by wiping out genes, like ones that cause Autism. No more Autistics.

Person first language is preferred by many groups. Autistics prefer Identity First.

The Neurodiversity Movement includes neurotypes like Tourette Syndrome and ADHD.

Accessibility is necessary for Neurodivergent people to succeed in their communities.

Nothing About Us Without Us is a Disability Rights slogan that promotes self advocacy.

Communication doesn’t just mean speaking, there are many ways people can connect.

Empathy may be a struggle for some Autistic folks, but that doesn’t mean they don’t care.

 

Notes:

  • Person First Language aka A person with Autism, instead of an Autistic Person, is generally recommended by Disability Advocacy groups. Most Autistics reject it because we believe that Autism is an intrinsic part of who we are. The Deaf Community also for the most part rejects Person First Language.
  • Other Autistic Cousins include Dyslexia, Dyscalculia, and Epilepsy.
  • Accessibility can include assistive devices (noise canceling headphones, stim toys, etc.), support people/animals, things like using email instead of phones, and having family/friends/coworkers learn about Autism.
  • The Autism Rights Movement borrowed “Nothing About Us Without Us” from Disability Rights, and have used the goal of Self Advocacy to found organizations like the Autism Self Advocacy Network (ASAN).
  • Other ways to communicate include Sign Language and Augmentative and Alternative Communication (AAC) Devices. Also, communication styles are as unique as the people who use them, so use what makes the most sense.

*please note, that I only speak for myself. Every Neurodivergent person has differing opinions, and when in doubt, trust the individual.

4 Reasons There’s No Post Today

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I’ve been having a tough week, health wise (see Monday’s missing post as an example), but I figured I could leave you with a short bit of dark humor

1. I think my head might explode: I have the headache from hell, and since it’s in my neck too, I’m having a hard times convincing my anxiety that it’s not meningitis. Also, my cat Spike is a mother hen when I don’t feel good. It’s sweet, except that he’s 18 pounds and he insists on constantly touching my face.

2. I keep falling asleep: And not just in appropriate ways like when I’m laying down. Sitting up is fair game too. You know the warning they put on NyQuil about not operating heavy machinery? I need that on me.

3. The world is spinning: Since I started physical therapy a few weeks ago, my POTS has been in a consistent flare. It’s depressing that 7 minutes of laying down exercise can affect me this badly. I’m eating tons of salt, like the experts recommend, but my I can’t really feel my face anymore…

4. My hands are shaking: Another POTS symptom, it’s because my blood sugar is all over the place. My body goes into full on trembling shaky sweaty rebellion if I don’t eat exactly every 3 hours. I never thought my pancreas could hold me hostage, but here we are. Who knows, maybe next week my spleen will demand $10000 in unmarked bills.

Thanks for stopping by, and I hope your bodies feel better than mine.