Hearing and Saying

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!

90% Shameless Self Promotion

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

 

Let’s Be Practical

It all started with a Buzzfeed quiz: Eat Your Way Through Europe and We’ll Reveal Your Dream City! I got Barcelona, and while I was reading through the blurb describing warm oceans and sea breezes I thought to myself “you know, I’d love to see Barcelona some day.”

But let’s be practical, I probably won’t.

I think the most heartbreaking part of being diagnosed as an adult is that I often still think that I am neurotypical. And since I’ve spent 28 years being bombarded by the idea that I can do anything I want, I see no reason why I can’t. As long as I Try hard enough.

I think we all know though, that autism doesn’t work like that. Now I’m not implying that we shouldn’t try! Yoda said “do or do not, there is no try”, and I disagree with the little green bastard, because I think “try” is not a placeholder for “do”, I think trying is an action in its own right.

And because of this, I subscribe to the school of Realistic Trying. To me, this means that I’m never going to stop pushing forward and doing things, but I’m going to be realistic about how I go about it. Let’s take Barcelona. Barcelona is in Europe. In Spain. I live in St. Louis, which is 4644 miles away, smack dab in the center of the United States. And thanks to the myth of Trying Hard, a large part of my brain still thinks that travelling that far is doable.

Let’s make a quick list of barriers to travel:

  1. I have a routine, and if it is not followed, it will eventually lead to a meltdown.
  2. I can’t deal with unpredictability, and travelling to a new continent is full of them.
  3. I am a picky eater, and my precariously balanced diet depends on me being able to eat safe foods.
  4. I get overwhelmed by people. I’m pretty sure a transatlantic flight would be the end of me.
  5. Sensory Overload. Enough said.

Yet my brain tells me that I Can Do Anything, and my common sense can’t shut it up. My brain tells me to Follow My Dreams. Common sense suggests maybe finding a more realistic dream, but this is quickly shut down. I Can Do Anything, my brain proclaims.

I can’t do anything.

I can do some things, and that list is always growing. This is what I need to focus on, because I logically know that I can’t just push through a meltdown with the power of Trying. What I can do, and what I need to do, is to get to know myself better. Find out where I can make little adjustments without compromising my mental health.

So on days when I try something new, I keep my schedule as close to normal as possible, even if I’m not at home. I talk myself through things that might be unpredictable, so I can be ready for them. I pack myself just-in-case food, and I know where the bathrooms are- just in case I need a break. And for the sensory worries? I never leave home without ear plugs, stim toys, and distractions.

I wish my brain thought those little adjustments were a success, but I think we all know by now that that it doesn’t. Because my dreams didn’t come true, it tells me, I must not have tried hard enough. Who cares about small victories? I’m not lying on a beach* in Barcelona, so I’ve failed.

Let’s all give a rousing Shut Up to my brain, because yeah, maybe I haven’t made it to Europe yet. Maybe I never will. But hey, let’s be realistic, I’ve got Nashville, and Chicago, and Kansas City, all a hop, skip, and a jump away, so let the road trips begin!

*I would never do this anyway. Wet sand is sensory hell for me.

 

 

 

4 Feelings That Suck

Sometimes you just feel like crap. Such is the human experience. I think that the goal of life should be making sure that good things are the majority, and the crappy things are the minority. But even if your life is mostly good, even if your feelings are largely positive- some of them still suck.

This post isn’t about changing these feeling. That’s a totally different post. This is just acknowledging that feeling like this are real, they exist, and that they are universal.

Plus, I find screaming into the void to be very therapeutic sometimes.

1. Getting lost: Realizing that you’re lost immediately turns you back into a 5 year old. All of a sudden, everything around you is 10 times taller and you’ve shrunk like Alice after she drank that potion. I get lost a lot. I’m not ashamed to admit it. Between having a terrible internal compass and stopping every 5 feet to touch something shiny, I’m a pain to shop with- just ask my wife. She always finds me eventually, but not before the panic that I’ll never see her, my home, or anything familiar, ever again sets in.

Honorable Mention for being lost in a more existential way as well. That also sucks.

2. Losing a special interest- I don’t know about you, but I’ve had special interests for as long as I can remember. And with the exception of Star Wars, none of them have lasted. And sometimes that’s ok. When a special interest gently fades to the back of your brain, it’s like it’s lived a good life, and now it’s time for it to go. Especially if it’s making way for something new. But there are other times. Times when you realize that something you love is being pulled away from you, and while you desperately try to hold on, all you can do is watch as it slips away. For me, I spend so much time with my special interest, that losing them is like losing a constant companion.

Honorable Mention for accidently gaining a special interest that you didn’t want. That also sucks.

3. Everyone understanding something but you: Smile and nod, just smile and nod. Because in situations where for whatever reason everyone knows what to do except you, you’ve got to fake it. How do the public collectively know what to do in these situations anyway? I find being in social situations like this comparable to everyone in the room doing a dance that you don’t know- usually I compare it to the Macarena- and they’re all having too much fun dancing to explain to you what’s going on. So instead you mentally beating yourself up for being too dumb to do something that everyone else can easily do, you tell yourself over and over that you don’t belong, and you’ll never to try again, because this feeling isn’t worth it.

Honorable Mention for spelling something wrong for years. That also sucks.

4. Being Misunderstood: Communication is hard for everyone, but I know that since I sometimes communicate in a somewhat non-standard way, I seem to run into misunderstandings more often than most. There’s nothing worse than getting halfway through an interaction, and then realizing that you’re having two different conversations, or realizing that you’re not being understood at all. Besides being really frustrating, it’s often guilt inducing, knowing that you’re bringing your best communication game, and it’s still not working. It’s like you’re grabbing at a possibility to connect, and you’re just missing it.

Honorable Mention for having your tone of voice be misinterpreted. That also sucks.

So this one was a bit of a…downer. Sorry.

I hope you know that I’m not trying to imply that these feeling are always present, or that wallowing or over-analyzing is the way to go.

I know that I’ve found it therapeutically useful to recognize when I feel like this, and acknowledge it, so it can pass. I also know that when I can share them with people who might have similar experiences, it can turn feels that suck into feelings of connection.

So go! Watch your favorite show, hang out with your favorite people, pet a puppy! Hell, pet 10 puppies.

Take good care of yourselves.

A Person is a Puzzle

So, thanks to certain organizations who shall not be named, I have a visceral reaction to puzzle pieces. I hate everything that that’re supposed to represent, and even more, I hate that they’re everywhere. On t-shirts and buttons and bumper stickers, placed there by people who think that by having a “I love me _______ with autism!” magnet that they’re somehow helping. Some of them are. Most of them aren’t.

Here are a few explanations of what people think the puzzle piece represents:

  • The mystery and complexity of autism
  • “(To) show that autism caused suffering and that children with the disorder would not “fit in” to society.”
  • “The puzzle piece meant they did not fit in.”
  • “(It) symbolizes hope for defeating the disorder.”

None of those things sound good to me. Acting as though autistic people are a “mystery” seems to me like a cop out. It sounds to me like there’s no point in trying to understand us, because we’re too complex. And while I think most of us have suffered at one time or another, suffering is definitely not something that defines me. I’d say that when I don’t “fit in”, it is often because people aren’t willing to get to know me. And I don’t want to defeat autism. It’s a large part of who I am, and I’d rather understand it and accept it into my life than get rid of it.

It think it’s a shame that the puzzle has come to this. I love puzzles, and think that the idea of people being made up of pieces is really accurate. Which leads us to….

I’m a Unitarian Universalist, and one thing about us is that we draw from a lot of different sources, especially during services. This morning, a piece was read called “A Person is a Puzzle”, and I immediately knew that it was something that I wanted to talk about. This is the sort of puzzle piece imagery that I want.

We are all puzzles. We are all whole. We are all enough.

 

A Person is a Puzzle

By Mark Mosher DeWolfe

A person is a puzzle. Sometimes from the inside, it feels like some pieces are missing.

Perhaps one we love is no longer with us. Perhaps one talent we desire eludes us. Perhaps a moment that required grace found us clumsy. Sometimes, from the inside, it feels like some pieces are missing.

A person is a puzzle. We are puzzles not only to ourselves but to each other.

A puzzle is a mystery we seek to solve—and the mystery is that we are whole even with our missing pieces. Our missing pieces are empty spaces we might long to fill, empty spaces that make us who we are. The mystery is that we are only what we are—and that what we are is enough.

Self Love

Valentines Day is coming up, and while I very much enjoy celebrating romantic love (my wife, Jess and I usually mark the occasion by eating chocolate and playing video games), I also think that the holiday is an excellent excuse to celebrate self love too!

As I think that I’ve mentioned before, I’ve spent a lot of time in Eating Disorder Treatment, which is basically a nice way of saying a butt load of therapy. Like, therapy 3 times a day. And a lot of the therapeutic emphasis is on self care and self love and all of those other ‘self’ things. So yeah, I’ve sat through a lot of group therapy on these topics.

And it may seem like I’m a self love zealot- I know, I have been talking about it a lot lately. But there are definitely parts of the self care thing that I think are silly, or don’t work for me.

For example, a lot of people have a really hard time with shame, and they need to put in a lot of time and effort to let that go.

And while I totally understand how it works, I don’t really experience shame (I do experience guilt, but that’s a whole different post), and so doing exercises around shame are sort of boring for me.

Self care though? I’m totally behind. Treating your mind and your body with care and respect? I’m all for it. I know that when I’m tuned in to what I need, I have more more energy, less anxiety, and I’m more flexible and less sensory sensitive. Win win, right?

There are lots of ways to care for and love yourself, and I’m just going to share today some things that I do in my day to days life.

Stimming is definitely the most important part of my self care routine. This is something unique to us neurodivergant folks, and doesn’t get included in most articles about self care. For me, this sort of self care takes two forms.

The first one is making time for stimming and sensory needs in my daily routine. I start my day with my favorite sensory friendly food (Cheerios). I take the time to knit. I wear clothes that are comfortable, tagless, with flat seems, and I buy the only socks that I find tolerable in bulk. I end my days lying in bed with my weighted blanket and my glitter lamp casting blue shadows on my ceiling, and I ease into sleep.

The second is certainly more challenging, but it’s also just as important. I call it sensory-on-the-go. And it’s a big deal because following my home routine is easy, really but dealing with the real world is hard. It’s really hard! You have to be able to sense what you need before you need it, because at least for me, by the time I realize that I need intervention, I’m not in a very good position to do it for myself. So on-the-go self care requires pre-planning, and, if you’re lucky, a buddy. So I don’t leave the house without a sensory emergency kit, and I check in with myself regularly, so meltdowns don’t take me by surprise. They still happen, but somehow it’s (a little) better if I know they’re coming.

I’m a total introvert, so this type of self care seems like the opposite of what would work, but I’ve learned that I need to connect with people. If given the choice, I’d go days without talking to anyone except my cats, and if you’d asked, I would say that this is the ideal situation, and that I was very happy indeed. And don’t get me wrong, I definitely need quiet me time, but as I’ve gotten older, I’ve realized that I really benefit from interacting with people. So I volunteer, and I play music with people, I interact at church, and I connect to my awesome internet community. And while there are days when I don’t want to talk to anyway (not even the cats), that’s fine, because I know that my connections will be there waiting for me when I come back.

There are dozens of other things I do to take care of myself, and if I listed them all, this post would be 26 paragraphs long, and you’d probably have gotten bored 19 paragraphs ago. So here are a just a few more things that I think are worth mentioning, and then I promise that I’m done.

Hot hot hot showers. I hate being wet, so I sit on the floor of the tub and let the steam come rise up around me. I also like talking to myself in the shower, which is apparently a thing?

Bookstores. There’s nothing more calming than being surrounded by books. Especially if they’re used, cheap, and smell good.

Watching movies I’ve seen over and over again. Being able to predict every line and every song makes me feel safe. Props to Moana, Into the Woods, and Sondheim! The Birthday Special.

I feel really grateful for my time in treatment because it let me think critically about how I treat myself. Learning about who I am and what I need has let me practice self care, which in turn has led to self love.

I hope you guys are able to send some love to yourself this week, because Valentines is about all types of love, including self love. Happy Early Valentines Day!

 

6 Word Stories pt. 24

Hello Friends! I’m here to apologize ahead of time for next week’s 6 word content. I’m having (minor) surgery on Tuesday, and that’s likely will be all I want to talk about.

This week however! I’ve been wobbling between being very productive, and very anxious about not being productive. And being anxious about what my productivity will bring. So basically, I’m damned if I do, and I’m damned it I don’t.  Let’s just say I’m contemplating big changes, and all of the options freak me out.

  • Is ‘life goes on’ a threat?
  • Changing my routine is so unnerving.
  • Hats with ears make people smile!
  • I disguise my need for help.
  • I hate peeing every 20 minutes
  • No matter what happens I panic
  • Good days are dog petting days

I think some of these 6 word stories are kind of downers, so I’m here to let you know that a therapy dog came by the infusion center this week and I got in lots of pets- and he licked my nose! So my week wasn’t all bad.

Until next week!