knowing

Knowledge = Data + Interpretation

I'm beginning to understand the depth to which autistic communication is entirely different than allistic.

I mean, that sounds so obvious doesn't it. But the lived experience of that difference is continually shocking to me.

I wish I knew how to let people know.

I do not understand what you are telling me.

You are giving me data. And that data has so many more interpretations than one being implied.

I do not know what you're implying.

I DO know that *something* is being implied. Only because I've learned through experience that there's always something more implied.

But I also know, through experience, that what's being implied could be one of so many different things with varying levels of meaning and rudeness* 

*Not the word I'm looking for but it's late and my brain no work goodly. Maybe, directness. 

So I have to reverse engineer and use deduction, based on what I know of this person and my past experiences with them, and also my past experience with communication in general, to guess at what's being implied so I can respond to that accurately.

Intrusive thoughts maybe, but I'm starting to feel that people are going to get tired of me referencing being autistic. And it's communicatio issues like this that make it so clear to me (1) why it's important to know that I am autistic and (2) how incredibly different autistic interpretation of "simple" interpersonal data can be.

I'm so tired of trying to navigate communication in allistic style. I get burned a lot. I misinterpret a lot.

On the flip side, Im also not sure I fully understand/know how to navigate autistic communication. That is, the way I was raised and social conditioning and lived experience, have all taught me something other (and, often opposing) how natural autistic communication works. 

Taught what "polite" is (social conditioning). Taught directness is rude at best, downright sinful and of the devil at worst. 

And I've been masking allistic communication pretty much my whole life. Pretending to know what people mean. Smile and nod. Agree, even when I don't understand. Take the hit when I misunderstand, and it's either hilarious or offensive to those around me.

The number of times I've been asked if I'm actually blonde. (Cause, dumb blonde.)

My best friend from college deciding we weren't friends anymore, before I even knew something was wrong.

"Autistics have trouble maintaining friendships."

Yeah, is that because no one actually tells them what's wrong, and expects them to know, but when they don't guess correctly, everything blows up in their face?

Cause thats what my entirely life feels like. Strings of relationships that blow up in my face because I had no idea what was going on and then got blamed for how I reacted.

bath time

It's been a little while. Baths are hard. For lots of reasons.

But it was time.

I told her as kindly as I could, why it was time.

Cue anxiety and protests.

I say honestly, you don't HAVE to.

Offer options and reasons, but no demands.

I start running a bath.

"You don't have to. I'm just going to run a bubble bath and see how we feel about it. You don't have to use it."

I'm not manipulating her. I honestly know that we may end up draining the tub without using it. It has to be an accepted option.

But where anxiety and executive dysfunction and sensory issues and *all the things* are concerned ...

I'm learning that just taking the next movement towards *the thing* can be so helpful.

So we talked about bubbles and [anything other than the bath] while making sure the water was the right temperature and adding extra bubbles for good measure.

The protests continued as she derobed. Louder and more frustrated. As she put a foot into the water.

I never said anything else about getting in. She just did. But as she did, she processed her feelings

"I HATE water!" she cried.

"I HATE being wet!" she yelled. "Ugh it's so awful!" As she puts in one foot and another.

"I know," I acknowledge. "It's tough."

I ask her, "what is it you don't like about being wet?" But she doesn't know and is frustrated, so I let it go.

I'm not exactly sure. It could be anything and everything. Transitions are hard. Going from dry to wet. Then from wet to dry. It makes the skin cold. It feels different. It feels.

I don't know *exactly* what it is. But I do know, it's hard for her. And it's maddening for me.

"Just take a freakin' bath," part of me wants to scream.

Instead, I take a deep breath, may or may not walk away and curse under it a bit as I exhale, and walk back in, trying to keep perspective.

This is hard for her.

And as she settles in to the bubbles, she gets swept away into the fun of it. Bubbles are wonderful distractors.

We have fun spray foam soap, so I make a game of spraying it at her. "Wasting it," my brain pushes away the sensible protests, and I spray her again, like we're having a silly string fight.

She laughs.

Laughter is the best tool I have most days. It diffuses so much tension and frustration, if we can get it just right.

She spends the next 15 minutes, happily playing with bubbles and soap and washing.

I get to sit down and breathe deeply and process this. It's a lot. It takes so much patience and self control. Self regulation.

It's hard. It's really. hard. 

So when I get a minute to breath. I do. Mindfully inhaling deep breaths. Furiously texting dear husband, venting *my* frustration,just as she did hers. And letting it sink in how hard the "simplest" things are. Grieving not doing things "better" than this, and simultaneously so grateful for this victory.

I'm proud of us. 

Cracked eggs

Part 1. The egg. April 7.

Elliott had an adopt-an-egg project this week. It ended up great but man it was a surprisingly huge source of stress for her.

The egg that came home the first day was cracked within a few minutes (she dropped it like five times while she was trying to put a dress on it). And then after she drew the face, she burst into tears and had a meltdown for an hour.

She had an idea of what she wanted to do with it, but every time she tried to do something, it didn't look right to her. "And someone else built a mansion for their egg. A mansion!" 🤦‍♀️😵‍💫

She asked if we could start over and I was like, absolutely yes, let's do it, so we hard boiled three new eggs 😆 (and by some miracle only used one of them!)

We practiced drawing faces until we got it just right (every time she drew hers, she said the eyes looked evil) and made it some awesome hair from hemp twine. (And I rediscovered the brilliance of hot glue!)

In the end, the class voted on superlatives, and her egg got second place for best hair! 

---

I keep thinking about how differently the week would have gone if I'd said "no, we can't start over, that's the egg you were given and you have to deal with the consequences." 

Student Loans

Between 2004 and 2007, I took out approximately $82,000 in private student loans for college. 

By June 2013, while I deferred my loans to attend graduate school, the amount had ballooned to $116,000, from interest alone. That's $34,000 in interest. So I could further my education.

*Notably, my degree was a B.S. - science. A field that, despite it's glowing reputation and mass publicity, nearly always requires further post-graduate education, to actually get a good job. Graduating in 2007 with a B.S. meant all of nothing in the job market. So, NOT going to graduate school, wasn't much of an option. 

I was fortunate to receive a stipend for graduate school. This lowered tuition to a manageable amount and provided almost enough to live on: $12,500 at the start of my master's program; $15,500 at the start of my PhD program. 

*That was my yearly income. We barely had enough to cover cheap rent and ramen noodles. NOT deferring my student loans wasn't much of an option. Doing anything at all with my student loans (i.e., paying interest-only), wasn't an option. I had to survive grad school first.

When I stopped deferring my loans in 2013, I had over $147,000 in total student loan debt ($116k private + $31k federal). *I graduated with my PhD in 2014, but stopped being a "full-time student" in 2013, which put me back into repayment.

As of March 2023, after a decade of payments, the total is down to just under $112,000. The private loans alone totaling over $87,000. Remember, the original borrowed about for those loans, taken out 2004-2007, was $82,000. 

So even now, 16 years after graduating with a bachelors of science, the amount owed on those private students loans is still more than the original amount borrowed.

-----------------

I was 19 years old. A first generation college student, and the first in my family to attend a 4-year university. My parents earned enough that we didn't qualify for federal aid, but not enough to help with many expenses. We were able to cover my first two years ('02-'04) without loans, by attending the local tech school, earning a few scholarships, and working part-time as much as I could stand.

I transferred to university in the fall, 2004. After flunking out my first semester, it was clear I couldn't sustain my studies in these upper level classes while working part-time and commuting from home. The only viable option I could see: student loans. It even seemed like the responsible thing to do. Getting an education was important, and how else was I going to get there?

The loans were surprisingly easy to get. We were so naïve. My dad co-signed, not knowing he'd be chained to them for the next fifteen years. -He never had to pay for them, but the hit on his credit was punishment enough.- I was finally able to refinance and consolidate them, with my husband's help, by the time I was 35.

*It's been all the more shocking as I've aged; going through the grueling process of purchasing a house. Even buying a basic sedan was more difficult than taking out six figures worth of student loan debt in the span of four years.

that autie life

Last night was fun.

If fun is akin to torture and beating one's head against the wall. Over and over and over. Then, yeah! Fun. 

It still surprises me sometimes. Maybe all the time, but definitely sometimes. There are very clear moments where I go, oh wow, yeah, they really are autistic.

Even though I know this - about them, and about myself - and live with this reality every single day... There are moments where the doors of my brain are opened wide all over again and I realize - oh, wow, this is different. They are autistic. This is what that looks like. Feels like. Lives like. 

And I have to adjust. Reset my understanding. Reset my expectations. Reset my demands and my tone and my words. And understand all over again - we are both doing the best we can. 

What you need

The juxtaposition of feelings this weekend has me reeling.

I have never felt so much like a great mother and a terrible mother all at once. Simultaneously. For the exact same reasons. 

Over the last two days, we have systematically faced -and conquered- "The Mat." That is, the matted hair that was so ever present it gained -to my horror- it's own personification. 

"I like my mat," she would declare. Honestly.

💀

The matted hair has been a battle for a while now, though maybe not in the way you might expect. There have been plenty of discussions about it, sure, but most of the battling has been internal - within myself.

By outward appearance, I'm obviously not doing something right. Everytime I watch her walk into school, with her hair so horribly matted, I hear what [I imagine] everyone must be thinking.

"How could her mother let her leave the house like that? ... My parents would never have let me get away with that ... She must have a really rough home life, I wonder if her parents even care for her at all ... "

And I silently plead my case with all the judgements I'll never get to hear or refute. 

Please, understand how difficult things are for us at home, that this isn't a priority for us right now, for good reasons. Please, understand how difficult it is for her to even be AT school and face the school day. How difficult every sensory stimulus is for her. How routine demands of everyday life are too much to bare. That merely surviving each day, sane and together, IS a success and accomplishment. 

Why does it feel like sending my daughter to school -or anywhere- with matted hair is a "bad mom" sentencing. It is, though.

I let it get that bad.

I didn't have the energy to fight that fight.

Not for one day or one week, but for months.

For months on top of months.

It wasn't a priority.

It literally couldn't be.

How can brushing your hair be a priority when just surviving from day to day takes so much? 

"But it's just hair! Get over it. It can't be that bad."

Or, my favorite - "Everyone has to do it."

Maybe it isn't "that bad," for someone without sensory processing disorder. Someone for who soft-touch doesn't register as literal pain and threat to their nervous system.

But when you undestand the cost of the task to them, it changes. It changes from,

"It's just hair, just brush it and move on with it already."

to,

"It's just hair, it's not worth the sacrifice of peace it would cost you to accomplish this task that's so difficult for you right now."

And so, we wait.

We prioritize. 

And one week turns into one month and then another and then, God-knows-how-many later, the stars have aligned and we are finally able to start tackling The Mat.

And I am so sad at how bad it is. So disappointed I wasn't able to do more. Grieving over how bad things must have been for us to paradox-acceptace the reality of the matted hair as part of our lives. 

And I am simultaneously so proud of us. So grateful we have been able to see past the matted hair and screams of protest. To see the need for safety and trust. For peace and rest. For help that didn't come by force. 

And it is the weirdest feeling in the world to be simultaneously so sad and so grateful.

Care Fatigue

It's not that I don't care.

I just, can't.

Like, when you've cried so much, you can't cry anymore. You're still sad, hurt, lost, feeling... but you're also numb. And your tears are spent.

I do care. Or, I would. If I could. If I cared to.

But I don't. Because I can't.

I'm all spent.

I've started saying something - mostly to myself but also to anyone I'm talking to... 

"I have more important things to worry about."

Are there problems that need to be fixed? Sure. So. Many. Problems. 

Work drama. Life drama. House drama. Clean the dishes drama. "She said what?!" drama.

And I just literally Can. Not. with any of it. 

I have more important things to worry about. Than all of that. Today, I have to survive. I have to make it from the start of this day to the end, and then get up and do it all over again.

I'm not trying to be all holier-than-thou here. This isn't me saying, oh my problems are so much more important than theirs. No, they're probably not.

It's just me saying, I have spent every last cent of care I could afford and I am broke and have nothing left to give. Nothing, except, 

Dust. Dry tears. Understanding. Sorrow. Fatigue. Deep, deep soul-fatigue.