LENS and Life, week of 12/22

Holy moly.  Well, I haven't gotten behind on entries for months, until holidays hit.  So I guess that's something.

No LENS this week, because my doctor doesn't have 800 mile long electrodes.  Hello from CT!  The 13+ hour drive was annoying, but Chris and I switched off driving every 2-4 hours.  As someone used to making the drive alone, or in 6 hour stints, or whatever, this was a really nice change.  Yay, sanity preservation!  There was no snow or difficulties (sans other drivers...) to speak of, other than a bit of rain.  I like my Christmases white, but I think climate change is going to have its way this year.  60+ degrees (F) in December is... unprecedented, at least in my lifespan.  It'd usually be at least 30 degrees cooler, probably 40 or 50.  Brrr...

This week will involve last minute frenzied gift-shopping and making.  I have uncles and aunts, and so does Chris.  They're all but impossible to shop for.  So having gotten some last minute ideas, we're taking today and tomorrow to acquire them.  Well, most of today and tomorrow.

To my displeasure, we're also making several social calls in this small amount of free time.  Christmas Eve and Christmas Day are going to be jam packed with his family and mine, and I was hoping to save some energy.  But as long as we're in the Northeast, Chris wants to see this friend and that friend, and visit this place and that place.  I have no real love for the area in general (sorry, any fond residents), so I'm decided unenthusiastic about the whole thing.  But we're only here once a year, so I'm not going to rain on his parade too much.

Let's see... highlights of the visit so far.  We went and saw a mutual friend of ours already.  It was mainly a low key visit, hanging out and watching one of the older Star Wars movies.  This was in preparation for Sunday, when we saw the new Star Wars movie, The Force Awakens.  I loved a lot of it.  It wasn't a flawless movie, but I like the new characters and hope they live up to their set ups.  No spoilers here, but do go see it if you haven't.  It's a fun watch.

We also attended a handbell concert that same day.  Chris has an older brother, David, whose wife rings, as they call it, with a handbell choir.  (I complained about their wedding almost a year ago)  Apparently David himself has actually started playing with the choir as well, but only recently.  The concert was glorious.  I don't play handbells myself, but my mother did for a number of years, and I have memories of her playing and arranging music for handbells.  And this choir was skilled!  They broke out a number of techniques I recognized (some of which are very difficult, especially with the large handbells the size of your head).  They also had a set of hand chimes.  It was a fun watch, and I recorded a couple songs on my tablet so I could show my mother later and recommend she look into the choir. 

On a less happy note, I am not sleeping well.  I wasn't sleeping well before we traveled, and the change of beds and the fact that I keep forgetting to take the insomnitol isn't helping.  Hopefully I can kick the trend soon.  I need as much sleep as I can get for the huge Christmas party my aunt is holding.  : / 

Must dash.  See you Friday!

Merry Christmas

Merry Christmas.  No post today because this week had been utterly insane.  Will try to get back on schedule for this Tuesday.

LENS and Life, week of 12/15

Eek, it's almost the end of the year.  I'm driving to CT in just a couple days!  Commence with the flailing and the packing of all the stuff!

LENS
1 site today.  I checked with the doctor: I'm at 9/21 site on my third brain map.  Between only doing one site per visit and the visits being every other week, this last map is going to take a good long while.  I seem to be doing okay, but I'm being plagued by my perennial problem: I can't honestly tell whether anything has really changed.  A certain amount of obliviousness is human nature for this kind of thing, and while I know that for a fact, it's still really, really annoying.  I think I'm doing better than I was while unemployed or at college?  Probably.  That might be like comparing potatoes to avocados, though.  My brain has rewired itself several times since I've been in college, for various jobs and a stint with unemployment.

Career Progress?
So, recently John Elder Robison, one of the two big names in autism advocacy, put out a call for reviewers for federal autism research.  Thanks to my connection with Puzzle Partners and Autism Support of Kent County (ASK) in general, I was able to get a letter of nomination to send with my application.  The position itself is basically consulting work, helping shape and direct autism research, meeting scientists, and learning about the current research.  It won't pay my bills, but it would be a great way to meet people and keep educated on the latest research for autism.  I'm hopeful that between the fact that I got my application in reasonably fast and the fact that I hold a bachelor's degree in psychology, my application will be considered seriously.

It sounds like what I've done is the first step in the process, though.  Actual paperwork will ensue.  Alas.  Not really surprising, though, given it's the federal government.  The government does things, but "fast" is not an adjective that I feel confident in applying to any bureaucracy. 

Titles/Improving My Writing
I noticed I have the tendency to write these entries but not always make them really simple to read.  A lot of easily digestible things I read are subdivided.  Especially if they're long, but even if they're not.  So I may play around with dividers between subjects in these entries.  I doubt it'll harm the readability, and it might even help.  

So I may take writing or psychology classes in the near future, but I seem to have missed the cutoff date for class registration for the colleges in the area.  By about a week, of all things.  Oof.  I may still be able to slide into a couple classes that didn't fill up, perhaps.  My brother pointed out, last time I saw him, that my writing could probably improve.  Which is quite true.  I'm trying to improve it by actually doing the writing, but I'm pretty sure taking a class or two couldn't hurt either.  Well, except for my pride. 

Article: Adult, Autistic, and Ignored

http://www.nytimes.com/2015/09/06/opinion/sunday/adult-autistic-and-ignored.html

This is a discussion of a soon-to-be more prevalent problem: autistic people and other people with developmental disabilities growing up, but not being able to live independently.  While I wish everyone on the spectrum was like me in that I did finally learn to do everything for myself, that is not always the case.

Being an adult and doing things like taxes, health insurance, full time job (or multiple part time jobs), keeping track of car repairs, and the like... is incredibly complicated and difficult.  Never mind all the daily stuff I have to do, like keep to a special diet, exercise regularly, keep food in the fridge, wash dishes, etc.  This stuff all builds up, and it's overwhelming.  Even to me.  Some people can't do that.  It doesn't make them less of people, it just means they need help.  Everybody needs help sometimes.

"State funding, it seems, remains keyed to the idea that the same maturational curve applies both to 'neurotypicals' and those with disabilities, and apparently relies on a magical-thinking belief that these young adults will somehow smoothly make the transition into adulthood without special guidance."

Can I get an amen?  Seriously, this is a thing, and it's blatantly false if you look at the data or ask some parents.  We don't usually grow and mature cognitively and emotionally at the same rate our peers do.  I'm 27 now, and at present I consider myself roughly 16 years old, emotionally.  Not quite as full of uncontrolled bursts of temper and emotion as a 13-14 year old, but definitely not as settled, emotionally, as a 20 year old should be.  I was probably 12-13 emotionally when I was in college, with a big unhealthy dose of "emotions are stupid, keep them away."

The article concludes with an appreciation that at least the author's brother is well taken care of, thanks to his mother's tireless efforts.  But that isn't the case for a lot of folks, and I really do worry that we won't have enough information to ease the transition between childhood and adulthood for the next generation of autistic people: the kids of today. 

LENS and Life, week of 12/8

NOW BEGINS ALL THE CHRISTMAS SHOPPING.  TREMBLE IN FEAR. 

(cough)  Zero sites today.  Whether or not the doctor is meaning to do it, I am definitely doing week on, week off for LENS.  My frustration levels (overall) are down, I think.  Stress levels too, although the end of the year likes to be stressful and frustrating.  I'm still kind of wondering what my brain looks like these days, and when the third map will be complete.  Soon, hopefully.

In sleep matters, the expensive supplement (multivitamin style) I've been taking seems to be having less of an effect in recent times.  I had this problem with melatonin as well; it worked well for a few weeks and then the effectiveness kinda tapered off and stopped.  This is one of the reasons I may pester my primary care person to get me into a sleep study... because supplements don't seem to be fixing whatever the problem is.  I'm noticing now that if I fall back asleep after waking up repeatedly, I seem to go right into REM (dream state) rather than doing the stages of sleep like you're supposed to.  The only example I know of doing that is when you're sleep deprived... your brain drops you right into REM, skipping everything else, because that's the type of sleep it needs most.  Hours-wise, I should be getting enough sleep, but if I'm not getting enough REM, that's bad news.  I'm not sure I feel up to tackling the issue this month, though.  Something for the new year, I guess..?  If my health insurance gets renewed properly. 

The ALLCAPS sentences that start this entry are my way of trying to laugh off the Christmas-frenzy and stress.  (Seriously, have you seen the parking lots?  The shopping malls?  Even the grocery stores?)  Even with just needing to shop for my side of the family and a few friends, my brain-gears grind and complain.  Almost everything is done at this point, though.  I pointedly gathered stuff together and did tons of shopping this morning.  Everything should make it well before Christmas.

I still have some extended family on both Chris' side and my side of the family to deal with, but neither of us really know what to get them, so I've asked more knowledgeable minds.  If I'm really lucky, said minds will get back to me within a day or two, and then the only thing I'll have to worry about is friends unexpected friend-gifting.  In other words, the gifts you weren't expecting and have nothing prepared to give in return.  (Yes, that's not how presents are supposed to work; no, that doesn't matter to my brain.)

Ah, crud, I'm not done yet.  I have cards to mail.  I bought handmade cards from a crafter-friend of mine and I need to mail them to people.  Maybe if I do that today, I can be done?  Except it's kinda early to send Christmas cards...  (It's also kinda early to send Christmas presents, but most of them are being shipped to me so I can send them or give them at the appropriate time.)  Blehhh, hanging (waiting) tasks.  Why do you eat my sanity, hanging tasks? 

A lesson I can take from this year's holiday gifting, though: shared experiences are great presents.  They're great because you buy them well ahead of time, they make for great memories, and if you can get a whole group of people in one go, that's an entire group of people you no longer need to care about getting presents for.  Chris and I got one of our shared friend-groups tickets to a symphonic video game music concert.  This was months ago.  The event is now entirely sold out, which does not even slightly surprise me.  However, it counts as 5 presents, and should be a pretty awesome outing.  We'll probably all pile into my minivan and drive up, hang out at the concert, enjoy the music, and perhaps even hang out after the concert at someone's apartment.  Should be a decent present, and a good time.  If I could figure out ways to duplicate this feat, gifting would be much much less frustrating. 

3 Observations From a Non-judgemental Gym

1.  TV Diversity is Highly Lacking.  Across 8 televisions, playing a variety of TV shows and movies, the most visible diversity I've seen in one scan across the screens was three persons of color.  Three.  (Not including sports games, because diversity needs to be in all kinds of TV and it hardly seems fair when you can get an entire team on the screen, 8+ people.)  Gee, modern TV, you know the diversity of the US is changing, right?  Try to keep up.  Prominent examples of shows toting nonwhite characters: the news (thanks President Obama), Castle (but it's not one of the main-main characters, it's one of the main-side characters), and some talk show I don't recognize.  Occasionally Planet Fitness' channel itself features minority-type people as well, so at least there's that.

2.  Even in a Non-judgemental Gym, People Still Love to Judge.  So today I watched a thin-ish girl dressed in bright pink walk past a dozen open treadmills to slide between myself and another thicker lady.  She then proceeded to obviously compare herself to us, matching my speed and pace.  Thankfully for my pride and sense of fairness in the world, she got a stitch in her side and burned out in 15 minutes.  Meanwhile I did interval  (run/speedwalk) training for another 10 minutes, because I am no one's bottom of the barrel comparison, thank you.  Like I don't have enough self-esteem problems without someone obviously making that judgement.

3.  Weird Decor Is Always Weird.  This gym's decor is purple and yellow.  Seriously, I cannot make this stuff up.

Yes, those are specifically branded cardio machines.

This isn't my particular gym, but it's close enough.  I keep my nose in a book, or use the Internet on my tablet, because looking anywhere else is an eyesore. There is no respite from the colors.  They're in the lockers, the stretching areas, the consultation room...  It's a shame I need my eyes to see my feet on the treadmill, or I might wear a blindfold while I exercise. 

LENS and Life, week of 12/1

1 site today.  

Oh dear, it's December.  When did that happen?  I still feel like I'm recovering from the gift-stress of October, and now it's time for gift-stress of December.  Thankfully, the vast majority of my gift-giving this year is actually taken care of, due to Chris' foresight and some cool events coming through.  I still have to find presents for my family, though.  Well, most of my family.  I have no idea, still, what I'm supposed to get my nephew.  When he gets a bit older and starts having interests, I can buy things that apply to that, but right now he's still too young and busy learning about the world to pick a specific part of it.  At least, last I checked.

What else... well, I had a "bleagh, sugar" day yesterday.  There's a big bag of M&Ms in the apartment from before I started the sugar limitation thing.  It's several handfuls more empty now, alas for my waistline.  I'm going to do better, but I think everyone has days where they're just done with everything.

I have a few more sugary things to clear out of the apartment; the trail mix I made right before I was told it's super-sugary and bad for me, the truffles my dear friend bought me for my birthday, some Ben & Jerry's ice cream I haven't touched because I'm afraid to see how much sugar is in it, and some fruit juice. 

I'm keeping up with the smoothie each morning thing.  I've basically settled on the first recipe, which is sugar-heavy (most unfortunate, but at least it's only fructose?).  The main culprit is the banana, which is very sugary but makes the smoothie nice and thick.  However, I've decided that nothing, not even berries and bananas, can make pureed kale taste good.

My mother and a couple other people recommend making kale chips out of it, rather than putting it in a smoothie.  I'll take that into consideration next time I feel like being experimental.  In the meantime, I'm just trying to use up the kale I bought for the smoothies.  A little bit goes into every morning smoothie I make now.  Not enough to completely ruin the flavor, just enough to put a gross edge on the aftertaste.  I'll either use the stuff up, or it'll go bad.  Either way, I'll be rid of it soon.

At present I'm keeping busy with finishing the Wheel of Time series (now on book 12), playing with a couple new games on my handheld console (3DS), and watching an anime with Chris.  I'd sort've gotten out of the habit of watching anime after awhile, and new stuff keeps coming out.  It's easy to get left behind.  But Chris seems to really like watching them, and it's relatively relaxing.  Good enough, right?

Today I picked up the final pieces of my old chainmail business.  Some people can make the transition between hobby and business, but I couldn't.  It just stopped being fun.  There weren't enough colors for it to make me happy by itself, and it didn't make enough money to ever pay my rent.  Not even on the very best month I ever had.   I think speaking and writing re: autism should be different, since it's not really a hobby and more of a drive. 

Article: The Invisible Women

http://www.theatlantic.com/health/archive/2015/10/the-invisible-women-with-autism/410806/?utm_source=SFFB

This is a lengthy, but highly informative, article showcasing the difficulties particular to autistic women.   There are four women whose lives they go into detail about, one in great depth.  All have struggled very hard with themselves and with the world around them. 

The article brings up a correlation between eating disorders and autism.  That's troubling.  I've had bulimic-esque binging tendencies, especially if I'm having a really rough day, but I don't purge like the disorder criteria state.  As such, I've always kind of assumed I've avoided that particular minefield.  In the article, Maya falls prey to anorexia, in part because of her love of numbers.  Perhaps the fact that I don't love numbers also helps?  I'm not sure. 

LENS and Life, week of 11/24

Zero sites today, because it's Thanksgiving week and doctors deserve days off too.  I don't feel any more irritable than usual, so perhaps the week on, week off thing will be a regular occurrence?  No idea. 

We're about 4 days into the sleep multivitamin thing.  I wake up repeatedly at night, which I did before starting all this stuff with melatonin.  However, I am at least not having grainy sleepy-sand around my eyes in the morning, so I presume it's doing something.  No idea what, but something.  I still don't wake up feeling rested and refreshed.  My doctor mentioned that I should probably pester my primary care person if I want to do a sleep study, because otherwise it costs upwards of $1000.  And it's likely to take months of visits, and possibly not even happen depending on what the doctors think. 

In any case, we're already pretty sure I don't have sleep apnea.  This is excellent, because sleep apnea can absolutely kill you.  Also you have to wear uncomfortable stuff to adjust for the fact that your breathing doesn't work right while sleeping.  I'd kind of like to pass on that. 

In less cheery news, I reapplied for Medicaid about a month ago and received a denial letter today.  It doesn't state specifically why, but since my (lack of) income isn't a problem, I'm calling them.  They can tell me why, and reinstate it immediately thanks very much. 

In career-related news, I'm keeping busy attending various autism and special-ed related events.  I certainly missed out on approximately a gadzillion headaches, growing up without knowing I was autistic.  My parents, too.  Yeeg. 

While I found much of the events depressing (they're geared towards younger people less able to blend in with neurotypical folks), there was a nice bright point that I'd like to highlight.  Last year, a law went into effect called the ABLE Act.  This is excellent news for pretty much any family with a special-needs or "different" member. 

The ABLE Act establishes what's basically a special kind of bank savings account.  The money in this account is exempt from Social Security resource checks that determine your eligibility for SSI, and can be saved or used pay medical expenses or other expenses. 

In short, the ABLE Act allows a person considered "disabled" to actually save money for their future.  One of the most valid complaints about Social Security is that it cripples people who actually want to get out of poverty.  If they have over $2000 ($3000 for families) in the bank account, they no longer qualify for assistance and are on their own.  Boy howdy, a whole $3000 dollars.  That's definitely enough padding for an entire family.  (/sarcasm)  Especially when they only have one half-broken car, and it breaks, and both parents are working and need transport... that's about the cost of one crummy used car.  Or, maybe enough to last a few months without support if they're lucky.  Or enough to make a down payment on some nasty high medical bills if someone gets into an accident.  Then they're all out of money and probably in debt to boot. 

As I understand it, most families and individuals on SSI have to stress about not making too much money, lest they lose their benefits.  And entirely unable to save up enough to safely get themselves out of it, thanks to how the law is written. 

So you see the problem here, and ABLE Act's solution.  At least for qualified disabled people.  There's a very wordy summary and Q&A here.

Beyond that, I've found out that while there are a few entry level position type job programs for autistic people and other folks, there aren't really things that appeal to me, or my web designer friend, or my friend who presently works at a phone survey place.  So we're all kind of in this uncomfortable place between the neurotypical people of our generation (can't find a job, where's a job I actually like?) and the folks less able to blend than we are (can't get anyone to hire us at all, because we don't do the song and dance very well). 

This makes me uneasy.  I'm trying to circumvent the song and dance of formal job applications by making my own career, but it's... concerning... to see how hard it is for autistic people that blend a little better to find something fulfilling.  Oh, there's lots of talk in the Special Education world about linking people with stuff they love, but very little actually doing that. 

I probably shouldn't be so hard on them.  It's not like neurotypical people find it easy to find a job doing what they love.  Or even knowing what they love.  It's just, it's so easy for us to slip through the cracks.  Because it's harder for us to be heard, and "out of sight, out of mind" is absolutely a truth you can rely on.