The First Swaintly Family Trip, Part 1

Our first family road trip, it was a long one.

And why shouldn’t it have been?  We rarely do things in half-measure.  Which is why this is going to get stretched out over a few days.  It’s a lot.

Pre-Game Preps

Thank the gods I know how to work on cars.  I changed the oil, air filter, and spark plugs, and I got the AC charged up.  Damn good thing, too, because it was hot as balls through the whole trip.  Global warming is real, folks.  All told, once I did a little calculating, that probably saved about $600 right there.  We were already ahead of the curve.

Craig helped me install the trailer hitch, and we were all good to go.  The trailer from U-Haul was picked up on Sunday and packed the same day…

But first, where the heck was the wheelchair ramp that we were supposed to get on Friday?  What’s a “Friday”?  What’s a “wheelchair ramp”?  What’s “supposed to”?  Pisshaw, you silly humans.

See, I’d deliberately ordered this awesome wheelchair ramp from Discount Ramps because they could have it delivered by Friday – plenty of time to put it on the car and make sure that it worked.  But Friday came and went, and no wheelchair ramp.  Saturday, I’m told by multiple people that we might be able to get it delivered, but no, that’s also not how it happened.  Before we were able to leave, we had to go pick up the wheelchair ramp from the UPS distribution center and just hope that it would work the way it was intended.

Because Daniel has a wheelchair.  He needs it.  He can walk, but it’s not a good idea.  (More on why that’s true a little later.)  Also, we fully intended for this ramp to double as a cargo platform.  It’s pretty damned important.

The First Leg: Monday into Tuesday

The first step was to get Miles to Wisconsin to rendezvous with his new flatmates.  We’d originally intended to leave by 8 in in the morning, which would probably put us at his new digs around midnight.  But, as per the previous ramp problem and having to get all that sorted, we didn’t really leave town until 11.

That would have put us in town at around 4 am, and no one should be bothering the neighbors like that as their first introduction.  We called ahead and suggested that we nap for a few hours and get there at 7 or 8.

No, the other roommate just had surgery and wanted us there closer to 11.

… okay, no biggie.  Maybe he doesn’t realize we just drove fifteen freaking hours, but whatever.

Through the power of the internet, I found a couple of friends who were native to the St Louis area and were able to find us a safe Walmart parking lot in which to sleep until a decent hour.  (Traveler’s Note: Most Walmarts do allow this unless it’s specifically posted.  If you see RVs parked towards the outside of the lot, it’s totally okay.  They’d rather you be alive to spend your money there.)

We woke up and headed the rest of the way up to Madison, where we played the Keep the Garage Door Open Game and found the demise of a single bookshelf as the only loss of the trip to that point.  Once the trailer was emptied of Miles’ things, we put the ramp together, got the wheelchair and a good portion of our things on it, and headed out to Adventure!

Tuesday as the First Test of Camp-atibility

See what I did there?

It was already too late to try to hit any serious tourist attractions, so we headed over to Lake Kegonsa State Park for an overnight camp.  On the way, we picked up a tent (something we wouldn’t have had room for at the start) and food and charcoal and such.  We got to the park, paid for the site, and set up camp for our first family camping trip.

Now, some of y’all might recall that I did a lot of camping when I was a kid, and Craig did a reasonable amount himself, but none of the boys had slept in a state park (so far as we know).  I wasn’t going to make them hunt or fish or anything like that this first time out, so we grilled hot dogs – just like the fire pit at home, which was part of why we’d decided to have a fire pit in the first place instead of a grill.  It was all part of the plan.

What was their favorite part of this?  (Hell, what was the favorite of all of us…)

Fireflies.

So many fireflies!  They were everywhere, deep in the forest – and the forest around there was thick.

We lucked out and got a site right next to the loo (which was a very nice brick building with motion-activated lights and compost toilets), and the water spigot was only a short trek down the path.  There was a fire pit and a nice picnic table, and plenty of room to set up the eight-man tent.

We brought sleeping bags and blankets and pillows.

You know what we didn’t bring?

Rubber mats or air mattresses, both of which we own.

This is one of the few regrets.  We know better for next time.

Adventuring with Boys Who Love Cheese

We slept probably a little later than was ideal on Wednesday morning, but no biggie.  I got up and made coffee and breakfast (like you do), did a little pretend-laundry, got the meds done, the whole nine yards.  The boys got up and goofed around for a bit, and we looked at nature up close.

Then, it was clearly time to do a mandatory Wisconsin thing.

We went to the National Cheesemaking Museum.

Collin really likes cheese.  Like, really likes cheese.

This is Collin watching the video about modern cheese making methods before we got to the old school methods walking through the old factory that makes cheese only once a year  We found out all the different ways that you could make cheese, what makes different types of cheese different, and what kinds of standards Winconsinites apply to their cheeses.  (Hint, it’s high.)

On the way out, on the advice of the cheese guide, we stopped at a shop called the Alp and Dell and picked up cheese curds and this one piece that, I swear to gods, tastes like frikken raisin bread.

 

Tune in tomorrow for the next installment, wherein there are more adventures and pictures and fun things.

Crawling under, climbing over

Well, that whole April Challenge failed… and I should have known that it would.  I’ve owed you guys an update for a while now, so here it is.

the Little Dream

Daniel had a two-thirds anterior corpus callosotomy on the 19th of April.  It was the lead-up to that event that cut short my posts – and writing as a whole.  I made notes, I puttered, but that surgery hung off of my arms like lead weights.

It was supposed to reduce the seizures and help us get him off of some of his medications, or at least scale back.  Kids with LGS tend to develop all kinds of health problems, but most of those are from the medications.  Of course, the alternative is that they’re dead because literally constantly seizing is not a great condition.

The surgery itself was okay, but the aftermath was not.  We went home after a week, only to end up back in the ER four days later when he started running a seriously scary fever.  He managed to give himself a nasty infection when he scratched open his sutures, which meant another surgery to wash it out and install a PICC line to deliver the antibiotics – for six weeks.

Unfortunately, the surgery actually made the seizures much, much worse.  Almost all of his medications have increased, and we’ve added another one to try to control them more.  On the plus side, he has a wheelchair now and will be getting more safety equipment.  Our next consultation with the neurosurgeon is in October, and we’re expecting to go in to complete the process with the posterior corpus callosotomy shortly thereafter.  Because brains are fun.

Not surprisingly, though, Mr. Charming has an actual fan club at the hospitals.  Since we can’t sit with him 24-7, they have sitters whose sole purpose is to watch him and keep him company.  He is so sweet, so lovely, that all of those ladies and gents ask after him and are putting in to watch him again when he goes in for another EEG in August.

Educational Pursuits

I finally caved in and re-started Ashford University again.  Turns out, instead of fighting the threat to their accreditation, they upped their game and added core classes, more programs, and let me change my major to something more interesting.

I’m still, for now, maintaining a 4.0, but I’m actually a little excited that the class I’m in now, SCI207, might knock that down a bit.  I mean, not like I’m not going to give it my all, but it’s a thorough subject.  And it’s about the environment, and you know how much I love that.

I shifted gears from trying to back into my goals to running at them headlong.  I’m doing a Business of Information Systems program, and I’m about to apply to the Honors School.  That’ll replace my minor of Writing, but it’ll get me into a bunch of super-awesome classes that I really, really want to take.

Simultaneously, I’m also taking a bunch of Udemy courses to try to round out some saleable skills in the meantime.  That degree won’t fruit anything for a couple of years still, and I’ve gotta do something productive in the meantime.

Writing

I know I still owe you guys a novel.  I haven’t forgotten.  The stress and travel of Daniel’s condition, plus the overwhelm of just so much stuff, all sucked my creativity dry.  I have the bones, though, and some really awesome support items (maps and sketches), though.  It is my solemn vow that you will not be without a sequel.

For the time being, you can still read “Middle of Nowhere” on Inkitt, but I’m toying with the idea of sending it to other agents.  I honestly do not have the time to commit myself to marketing all day, every day, which is what they’re looking for.  Also, I’m not sure that my story fits with what the crowd at Inkitt is into.  The novels that are getting chosen for publication are supernatural romances with werewolves and vampires.  That’s definitely not what my world is about.

I’m still tinkering with some short stories, too, but they’re not flowing like they used to.  I’m thinking that once we get a little more of a normal schedule going, maybe that will be easier.  I still have a Patreon page, and I am drafting something new and exciting to post over there as well.

I do have other kids, you know.

It’s easy to skip over because Daniel’s condition kind of eats all of our attention, but the other kids are pretty damned awesome, too.

[REDACTED]

Miles is leaving for college very soon.  He got into the University of Wisconsin at Madison for Political Science, which we knew was totally going to be his thing.  (You can still contribute to the trip and maybe get a teapot set out of it.)  He graduated Magna Cum Laude from MacArthur and arranged all of his financial aid, living situation, and entrance stuff, all on his own.  He’s got a clear vision on how to use his super powers, and I swell with pride every time I think of it.

Joseph is really working hard at pursuing his desire to make movies.  He’s definitely in the horror genre and posts his stuff to YouTube.  He’s still leaning heavily on Five Nights at Freddy’s, but it’s a property that speaks to him.  When he’s not doing that, he’s being a total household rockstar and helping with Daniel, cooking dinner several times a week, doing chores, and just generally being awesome.

Collin and Cyrus get to stay with us for all of July this year, which gives us lots of time to science and to explore.  They also put together a YouTube channel, mostly to post gaming videos.  Cy is following closely behind Joseph on the household rockstar path and will be learning at least three more recipes before he goes home.  Collin has a deep fascination with “old” technology and is slightly in love with my 1968 Remington Standard manual typewriter.  They still dress up to play every day, and I get the giggles listening to them make up stories.

Finally, my Gaia found herself a great job at an eye clinic, is taking care of her own bills and expenses and looks to be starting school in the fall at a community college.  She’s got a plan, a foundation, and a great guy. She’s so un-drama, it’s awesome – and also collects tattoos, which is awesomer.

In a nutshell

I still get stressed out and overwhelmed sometimes.  I kinda want to apply for a chaplaincy program at Children’s, but I also kinda want to take an insurance adjuster class – something to keep food in the fridge until the nefarious dreams come to fruition.  I’m really fortunate that I have a great foundation in my husband and family that I can weigh those kinds of options.

Am I still scared?  Of course I am, but I know we’ll get through whatever happens.  It’s just the human bits that get squishy sometimes.

Deconstructing Me: Adult Autism

autistic-kids-rockWhen I found out a few years ago that I was on the autistic spectrum, it was a huge relief.  It made so much of my life suddenly make sense.  My shoddy school behavior and difficulty with monotonous jobs was all attributed to ADD!  The social awkwardness that I could never get over?  Totally autism!  Still, for the most part, the discovery was a novelty.  I figured that I’d just go along with my life like I always had, and maybe being aware of my quirks and weirdnesses from a different angle would give me more power over them.

Well, I was a little right, but not quite enough.  Actually, nowhere near enough.  I mean, I was able to identify my quirks as relating to my neuro-atypical-ness, but it’s taken even more to figure out the difference between what made me “me” and what was an affectation that I’d developed for getting on in the world.

See, when you don’t know that you’re an autie and you feel separated and different from other people, you try to hide it, compensate for it.  After all, why can’t you stay interested in regular subjects or sports?  Why don’t you like the things everyone else likes?  Why can’t you pay attention?  What can’t you just suck it up and be like everyone else?  What the hell is wrong with you?!

You try to act like other people do, you try to blend in with their weird little social rituals.  You try to understand why they do what they do from their perspective, ideally, but you can’t necessarily relate to why they do what they do.  You do your best to mimic them and go through the motions, and you can pass as them for a little while, but it’s hard.  Like, really hard.

Hard maybe isn’t the most accurate word, though.  Maybe that’s part of it, but more accurately, it’s exhausting.

Birds and Fish

Imagine being a bird in a world of fishes.  You’re on the shore, and you’re supposed to go to school (heh) with them, and you’re supposed to get on with them, but you’re still a bird.  But, it’s what you’re supposed to do.  So, you dive in, hold your breath, do your best to make friends.  After a while, you can’t hold your breath anymore.  You have to come up for air, to get back to your own element.  Your fish friends and lovers sometimes get pissed off because you leave them suddenly.  Some understand, or at least accept, that you literally cannot help it.  You have to breathe, for fucks’ sake.

Some auties learn to get through this by holding their breath for a really, really long time – unnaturally long, even – and then when they have to come up for air, it’s a huge explosion of flailing and gasping and sometimes people get hurt (fish and birds alike).  Others work out ways to only spend a little time hanging out with the fishes and then hiding on the shore so that no one realizes they’re not in the water all the time.  Still others use drugs or other tricks.

Me, I kinda want some SCUBA gear, I think that would work best, but I also want to have permission to not be in the water all the time.  SCUBA gear would make it so that I could be comfortable hanging out with my fish friends.  I wouldn’t have to think about how the fuck to breathe when I’m around them after more than a few minutes.

Another big problem is that the world is made for fishes, so a lot of the mapping and processes that we’re taught in school and for work only apply to fishes and to the life underwater.  When you’re a bird, you can’t use the aquatic navigation methods to get around the sky.  And because no one teaches bird-type things as a regular course of life, most of us are on our own trying to sort it out.

And that means that when we do finally find each other, we’re often just as confused as everyone else as to what it takes to get on in the world.  And then it’s even more complicated because there’s more variation in birds than in fish, it seems, so what works for a sparrow isn’t going to work for an ostrich or a hawk.  We have to take bigger and bigger perspectives of the world in order to make any kinds of real general statements about our condition.

So, that’s how it feels when we’re trying to get on in the world.  It sucks a lot. We’re all in unmapped territories, trying to find our way.  It’s difficult living with fish-things, but in general, we like fish.  We like hanging out with them and making friends with them and sometimes even being lovers and getting married and having biish or fiirds or whatever they end up being (usually birds, fucking thanks, genetics).  We want to try to get along with them.

We just can’t be the only ones making an effort.

The Glass Wall

There are lots of different types of birds/auties, and it really seems that no two are the same.  There are general “symptoms”, of course, that get mixed and matched together into every one, but sometimes that’s just presentation.  What works to help control the less desirable behaviors in one might not work in another.  This makes ideas like “treatment” really touchy, especially when words like “treatment” come out as synonymous with “because there’s something wrong with you”.  Our greatest commonality is that we are fully human, and we want to be treated as such.

For all that any general statement is hard to make about auties, there are some commonalities that I’ve observed.  I’m not saying this is true for every last person on the spectrum, but it does seem to be holding up a great deal to scrutiny.  (Your input, gentle reader, is encouraged.)

Specifically, we auties are behind the Glass Wall.  For some of us like my non-verbal son, that wall is super-thick and full of occlusions.  He can’t communicate effectively or regularly from his inside world, and he can only sometimes make out what’s being told to him from the outside.  He does have a brilliant and vivid world going on in there, clearly, but good luck finding out what it is past the wall.

A lot of us “higher functioning” types have thinner walls, but we still have occlusions.  That glass acts as a fun-house-mirror type lens.  We tend to take things super-literally, for instance, because we can’t always “see” body language to indicate a joke or sarcasm.  We miss critical cues that tell us whether or not someone is a threat.  If we tend to underplay threats, one bad experience makes us doubt all future experiences that might look kind of like that one bad time.  We have a hard time discerning the factors and variables of interactions because the world is written in fish-language, which will never be our native tongue, no matter how much we study it.

Some parts of the wall become telescopic lenses, and these are our fixations.  OCD behaviors, for instance, are when we notice this One Thing.  It’s the Most Important Thing.  It could be how the towels are folded (one of my big ones) or how the pencils are aligned or putting all the little cars in a row or only eating the vowels out of the Alphabits cereal.  (I’m not kidding, I’ve seen this happen.)  It could be texture issues, touch issues, certain types of sounds, control of our bodies… any of these things become so much bigger than neurotypical people experience.  We’re not being “overly sensitive”, we’re seriously experiencing this Thing more than they are.

Just to make things a little more “fun”, the thicknesses of the walls change with many factors.  Food sensitivities, hormonal cycles, extended forced social interaction, money problems, relationship issues, and pretty much any kind of stress you can imagine will thicken that wall.  “Go-to occlusions” – usually false ideas that we fixate on in anxious states – start to color the world.  Everything is a threat, everything is bad, everything is dangerous.  Our fixations are bigger than anything else, so much that we don’t know they’re false in that moment.  Any other time, sure, we’re logical people, but when we’re stressed out and melting down?  Nah.

It’s the “high-functioning” adult version of sensory overstimulation.  Some of us have meltdowns and literally table-flip.  Some of us shut down into deep depressions.  Some of us run away, some of us lock up behind an impenetrable wall of blank, but almost always, there’s a neurotypical person looking at us in confusion, trying to figure out what the big deal is.

What to do, what to do

It would be super if we could start building a world that was equally suitable for fish and birds.  Some of the things that birds really need to feel comfortable would make the world a better place in general, and fish definitely seem to benefit.

For instance, most of us have food sensitivities, but those reactions are to things that most people shouldn’t eat anyway, like Red Dye 40 and enriched bleached flour.  (Some of us can’t eat wheat at all, and we are very sad bagel-less people.)  Because we are so literal minded, we also have an intense sense of fairness and rightness.  If we are taught that the Rule is This, but then people start behaving like That, and no one gets called out about it, this creates enormous anxiety.  What’s even worse is when we are taught the Rule is This, and we act according to This to the best of our ability, but then we’re reprimanded for it.

Justice and fairness are big deals.

We like true things, we like things we can trust.  We like transparency and for topics to be fully explored and explained.  We like knowing all there is on a subject, digging in deep to something we love and finding out everything we can about it, and we like sharing that knowledge with others.

We have needs, just like neurotypical people, but what confounds us “high-functioning” folk a lot is how often neurotypical people don’t seem to pay attention to their own needs.  Our perspective makes our needs loud and impossible to ignore, but that doesn’t make them less than yours.  Your alarms are quieter, I think.

Maybe if you fish could make room for us birds in the world, we birds could teach you fish how to take better care of yourselves.  And given our love for you in general, we’d probably help take care of you, too.

It’s only fair.

 

I’ve been up to no good

1573214063-funny-cat-repair-car-engine1Sometimes I feel like the absolute worst project person ever.  So many things need to get done, things that I’ve committed to, and yet, shit happens.  And it happens a lot.

For instance, right now I’m doing a contract for a real estate guy.  This is a square-one type of arrangement where I’m building his entire brand from scratch.  I’m plugging away at it, learning new things, refreshing my memory on old things.  I make serious progress on a daily basis, and then…

The Car Repair Demon ate my entire yesterday. I did a Seafoam tune up Tuesday night.  We drove out near Rendon so that we’d have plenty of time to blow the carbon out of the engine on the way back.  Then I took the negative contact off the battery to reset the computer and drove for a few blocks.  The Check Engine light came back on, and I popped out to the AutoZone to talk to Pretend Kevin about the problem.  (He’s called “Pretend Kevin” because I have no idea what his name actually is, but he just looks like a Kevin, you know?)  Everything was working great, no problems, just had that damn light on.

Wednesday morning.  My husband gets me up abruptly, telling me that I have to take him to work because the car won’t start. This is a big deal, as I’m pretty sure he’d rather have his toenails pulled out with red-hot pliers than ride in my car.  The CV axles need to be replaced, which happens this weekend.  There’s no AC, that might happen eventually.  Also, and I may or may not have run the front driver bumper into a pylon gently… about four years ago.

(She looks like hell, but she runs, and she gets great gas mileage.)

So, I take Darling Beloved to work (am I the only one that doesn’t use that phrase ironically?), and immediately head straight to the internet.  Noise description checks out, consistent with a bad battery, but the all the lights come on just fine… eh.  Upon reflecting on it, the negative contact did look like hell…  The contacts got the soda pop treatment to get rid of the hefty corrosion and then I give Hubby’s car a jump.  It fires right up.  I turn it off, wait for a half a minute, and try again – nope, back to that sickly machine gun sound, and this time, there’s a little puff of steam.

Huh.

I dragged Miles out to rev the car for me to see where the steam came from, and it’s the negative contact.  Of course it is.

I ran up to AutoZone again and take the battery.  Hmmm… 89% charge, so not too bad.  We talk about the battery cable replacement, pick out what we think is the right one, and the guy (not Pretend Kevin) checks the battery again.

The battery now has an 84% charge. It’s been about a minute.

Okay, cool, time for a new battery, and no charge because it’s still under warranty.  Perfect!

I get home and disassemble the battery cable.  Now, that’s a little weird… The one I bought has only one main cable and then one teeeeeny tiny little ground wire.  There’s no way I could splice it (the gauge is way too big on the cables I’ve got).  I go back up to the AutoZone, now miffed that the Not-Pretend-Kevin didn’t even ask me which car needed the cable.  The manager helped me that time.  We figured out how to attach a smaller normal battery cable to the contact bolt.

I got the cables replaced, the battery back in, and she started perfectly.  The goddamned check engine light is still on.

For the record, we’ve consistently gotten the P0037 code, for the Bank 1, Sensor 2 heated oxygen sensor.  I have replaced it twice now – once with a universal, once with an OEM.  I’ve also replaced all the spark plugs, done the tune up, and changed the oil.  And, no, I’m not taking her to another goddamned mechanic unless they can tell me a better idea up front.  My previous favorite people decided to start charging way too much for simple repairs.

And that’s why I didn’t finish doing the MailChimp automation yesterday.

It’s similar things to this that also explain why I’m behind on “Lost Ground”, “Long As There Are Violets”, and “the Kind Invasion”.  I swear to you, though, I have no forgotten.  I think when the kids start school next week, getting caught up will finally be a thing.

Brain dump busy days, welcome

Hand writing So Many Things in To Do List with red marker isolated on white.

I’ve been a bit on the busy side.

Cleaned the garage, finally.  Now it has a big separating wall that keeps the art and construction stuff to one side (the side with the garage doors) and the gaming and meeting place on the other.  It also has a free-standing air conditioner and a coffee bar.  I have priorities.

Got a paying contract, finally.  After a week of negotiations, I finalized a deal with a guy who works in real estate buying houses.  Great guy, I think this is going to work out well.  Thing is, it illustrated for me a few important things:

  • Most people do not understand that when you sign a legally binding agreement with someone and put a clause in to protect your interests, you must be willing to let them insert a sister clause for the same protections.  Expecting all the protection and offering none in return is shitty.  I don’t blame the guy for not understanding this, though.  Standard business practices have always been dodgy.  This is how we change them.
  • When you’re looking at a project but still have the promise of a long-term business relationship, make the first agreement short term.  It’s like dating.  If the first date went okay, think about how it’s going to go for the next month to three months before picking out your vacation together next year.
  • You have the right to ask for special clauses – especially for a short term contract – if your red flags have been set off.  Me, I get nervous when people talk about having a lot of money.  This has traditionally been followed by them trying to screw me over big-time.  Like, golly, I guess that’s why you still have money; you don’t pay people.  So, I asked for the first short-term agreement to be paid on retainer with reimbursement for expenses.  This is not common for for in a long-term arrangement, but this first quarter is all about establishing trust.

I utterly failed at my two-week writing goal, but that’s okay.  The goal was 70,000 words for two weeks, spread across several different stories.  Some came with deadlines, some were just neat ideas.  I got about 9,643 words into it (not counting the incomplete ones), and then this contract thing happened.  I could technically count the 2000 words that went into the pre-sale audits, and the 1000 words that went into the audit, and also the other 2000 words that went into a surprise game design document… but I’m not going to.  They wouldn’t help.  I’m not crying over spilled milk.  However, that goal was based on being able to write for four to six hours every (work) day.  This new gig is deliberately designed to be part-time, so my new writing schedule is going to center around that.

I updated my writing tools.  I tried Scrivener ages and ages ago, and I hated it.  It felt like it was making my job more complex than it needed to be.  I recently decided to try it again, and I gotta say, I’m pretty impressed.  I like having the cork board feature, I like the way the chapters can be broken up… I’m digging it.  I also started using the Hemingway Editor.  It tracks your passive voice use, your sentence length, writing complexity… I don’t know if it really makes me a better writer, but it does illustrate how long I like to make my sentences.

Other things have been going on as well, but they’re not quite blog-worthy.  I’ve been toying with an AR game design, with a new cooking blog, and with numerous other projects, but nothing is really ready to emerge just yet.  Thanks for listening, I’ll be back shortly.

Oh… and one more thing…

TEAM MYSTIC, BITCHES!!!