Category Archives: Disability

Posts related to living with a disability.

May 28, 2011 · 12:43 am

This is one great day…

♫♪ I’m so happy, feeling snappy, my life is rosy, I’m feeling comfy cozy…
keeps getting better, good days forever, and this is one great day… ♪♫

I had a great day today!  I’ve been having a lot more of those lately.

My arm is doing so much better these days that as long as I remember my meds it hasn’t been hurting at all when it’s at rest… a very far cry from the constant screaming pain it was in for so long.  I’ve been able to make blocks, hold a microphone, mow, pull weeds, and many other things, as long as I work in short spurts, take proper breaks, and splint it when I’ve overtaxed it,  it continues to cooperate.   My throat is still blistery, but it hasn’t been particularly inflamed or in pain, which means it’s not affecting my singing voice at all (hence the song posts of late).  My legs have even been cooperating more — I’ve started using my leg braces more again, which I had neglected for a few years, and it’s letting me do a lot more.

Combine all of the physical improvements with a good church, warmer weather, and the promise of 5 whole weeks with my best friend this summer, and things just look so much brighter around here.

Today I actually got to spend the entire evening with a friend.  I helped her break down her yard sale for the evening, we had dinner together, went to church, and spent way too long yacking about anything and everything … it was great! :)   We kind of fell out of touch over the winter, hopefully we’ll be able to get together every few weeks or so now, though.  I might even manage to drag her to a concert sometime this summer.

 

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May 7, 2011 · 8:33 pm

Back in my day…

Today I was thinking about this study, which came out the other day.

I read it a couple of days ago and didn’t think too much of  it.  It pretty much agrees with what a lot of us have been saying all along, that there isn’t really an “autism epidemic” – it’s just that a lot more people are being diagnosed, as autism is more clearly defined, the ‘spectrum is widened, and the symptoms are more widely recognized.  There are plenty of autistic adults around, in all areas of the spectrum.  Some of the ‘lower functioning’ adults were diagnosed as children, many of them were misdiagnosed with other developmental disorders, but a lot of them were never diagnosed at all, and have just had to make it through life as best they can, challenges and all.

This brings me to what I was thinking about today.  I’ve heard a lot of parents say things that have been very hurtful to autistic adults.  Things like “you don’t speak for my child” or “you’re high functioning, you don’t know what it’s like for my child”, etc, etc.  Parents write blog posts about how their kids can’t do this, that or the other, and can’t be expected to, because they have autism, and how dare the world not conform to their needs?  They get absolutely livid with their parents, or their grandparents, or aunt June, when they say things like “well, in my day, you ate what you were given” and “we didn’t put up with that kind of behavior”.

Parents say “these people just don’t understand” and “they have no idea what it’s like to raise a child with autism”.

But you know what?!  Maybe they do.  There’s ample evidence that there’s a genetic component to autism, and that grandma, the one who raised the father of your son (or perhaps the aunt who raised cousin Billy, or that old neighbor lady with the quirky son)?   She might have had to deal with a lot of the same things you’re dealing with.

But in her day?  There weren’t rules in place forcing schools and insurance companies to provide early intervention therapies, she couldn’t just send him off to professionals to teach him how to eat new things, or ride a bike, or hold a conversation, or speak clearly, or stop banging his head.  She couldn’t afford to take him to McDonalds to get his favorite meal every day, if he didn’t want to eat the food that came out of her garden.  She knew the schools wouldn’t think twice about spanking him for ‘acting up’, so she had to find ways to help him learn all of the necessary skills on her own.

And your hypothetical husband (or cousin, or neighbor)?  His autism is still there.  He’s still got quirky habits, shies away from social situations and annoys the crap out of you with his eating rituals and his fixation on certain subjects, but he he functions, more or less, in society.

Perhaps grandma, or aunt Ruby, or that annoying old neighbor of yours does know something of what she’s talking about.  Autism isn’t some newfangled thing, and you’re not the first generation of parents that have had to learn how to raise autistic children.  The past generations raised these children so well they didn’t even have a name for it, and at least on the higher ends of the spectrum they didn’t even consider it a disorder.  Some children were just more difficult to raise than others.  Perhaps there’s something to learn from them after all.

Most of you know that I consider myself autistic (very high functioning), you can draw whatever conclusion you want about that.  In most areas, I wouldn’t advise anyone to take advice from my parents about parenting, as I’ve been through a lot more than I would ever wish on anyone.  And I do believe that my life would have been much easier if I had known about autism 20 years ago.  Knowing would have eased my mind about who I was and what was wrong with me, and it would have given me a better idea of what types of help I needed to get.

But I wonder, if I had been born in this generation, diagnosed at an early age, put through battery after battery of different therapies… if I my quirks had been excused because of my diagnosis, or I had been stopped from ‘stimming’ every time I went to swing for hours or played the same song over and over and over… if I had spent years in therapy trying to learn to display empathy and look people in the eyes before I was ready… if I had been put in a separate classroom to work on my ‘social skills’ instead of starting kindergarten early (because I already knew everything they taught in preschool) or if I had been kept from starting college early because of fears about my emotional maturity… would I be the same person today?  Most assuredly not.  And on most of these points, I really don’t think I would have been better off for it.

I know most parents want the absolute best for their children.  This is the reason they push for as many early intervention therapies as they can.  They spend thousands upon thousands of dollars on treatments (which often aren’t affective), just to try to help their children beat the odds that say that autistic adults are so much less likely to ‘make it’  in the world. (And don’t even get me started on ‘alternative therapies’.)

At the same time, many of these parents shun the advice of autistic adults and those who raised them.  The amount of disdain they hold towards a given individual seems inversely proportional to how ‘autistic’ that adult seems… is the madness not evident here?!  The ones they want their children to most end up like are the ones they’re least likely to consult.

The next time you snarl and roll your eyes at the advice of an elder, or an autistic adult, perhaps you should check yourself and see what they actually have to say.  And maybe, just maybe, you could better use some of that time, energy and money you spend fighting schools and insurance companies to research what past generations did and work with your child more.

Of course, not every Aunt Betty or grandma knows what they’re talking about when they make snide comments, but perhaps some of them do.  And some of the therapies we use today are definitely better than what they did back then.  I’m not saying therapies and interventions are bad (though some types most certainly are), but I do think perhaps this generation has lost something by shunning the past, thinking autism is a new phenomenon and the book has to be rewritten for raising these kids.

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April 25, 2011 · 8:43 pm

Keyboardwoes

I’m sorry for the scarce blog posts.  I had been doing well with regularly posting there for a while but my keyboard’s space key went and crapped out, and it’s really hard to type much when you have to paste in a space between every single word.  (Not to mention all the times I accidentally hold the control key down too long after doing so and end up typing other control key combinations and losing everything or shutting programs down).

I’m pretty computer savvy, so when my laptop’s space bar stopped functioning I took it apart, cleaned it, reset the nipple, and put it back together, but apparently the lead itself  is bad, so I’m out of luck.  I spend enough time online that I go through keyboards pretty quickly, but this one isn’t even old enough to have any of the letters worn off, so it must have just been badly made.

Since my desktop computer’s chair is currently holding a printer that’s too heavy for me to move, I’ve switched now to a weird setup that has me using my desktop’s wireless keyboard while I’m sitting here looking at my laptop screen, which shows me what’s happening on said desktop – unfortunately the wireless kb’s keys are not as ‘springy’ and light to touch as my laptop’s.

Most of the time, when my upper arm isn’t acting up, I can manage to type fairly well and quickly, despite the peripheral neuropathy that has shredded the nerves in my hands.   I do depend on the springs in a keyboard, though.  I can tap down without tiring my nerves too much, but if I have to pick my fingers back up they tire incredibly quickly. So I make sure every keyboard I buy has very very springy keys, with as light a touch as possible.  This one, though,  is one I got in trade from a friend — I had no money to spare on another at the time — and I don’t use it often enough to have bothered picking up a new one later.

I wish at times like these that I had a good speech recognition program, but I find it nearly impossible to properly articulate when I’m tired, and both my strange habit of unintentionally and  randomly switching accents and my inability to regulate the volume of my voice (I honestly can never tell when I’m yelling or being too quiet) makes it nearly impossible for me to manage to use voice rec anyway.

So all this rambling was basically just to say that I hope my new laptop keyboard gets here quickly so my life can get back to normal.  I’m hoping for tomorrow…

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March 23, 2011 · 12:40 pm

Perspective Taking

I have a neurological condition that causes simple things, like walking, to require actual thought on my part.  Walking also, more often than not, causes fairly significant pain.  The same condition, unfortunately, also affects my arms and my stamina.  So everywhere I go, I’m left with a difficult decision:  Which ambulatory aids will serve me best right now?

Most of the time, these days, my legs are mostly functional and my pain levels are nowhere near what they used to be.  This means that on good days I can walk a little ways before I have to be worried about it.  A trip into the local post office or convenience store can usually be done without even taking my cane.  A trip to CVS or Walgreens, which aren’t very large here, and have carts I can lean on, can often be done on foot.  A trip to the grocery store or Walmart, however, is impossible without my wheelchair, even on a good day.  I can usually walk into a restaurant with my cane, since I’ll be sitting for a bit between, and walk back out with no problem.  A movie, however, means sitting in one cramped spot for over an hour, so I know I won’t be able to walk back out.

Most places fall somewhere in between, and I usually have to take a minute, upon arriving, to assess the best solution.  This assessment  involves things like the amount of walking I expect, the terrain, the weather (wheelchairs in rain or snow kind suck, but leaning on a cane with a wet tip can be disastrous), how sore my legs are, how sore my arms are, how tired I am (the wheelchair, though it’s ultra-lightweight, is still too heavy for me some days), and, on bad days, "how badly do I really need to do this, anyway?" (I frequently get to the grocery store parking lot and just give up and drive home).  

Whenever I go somewhere new, and the size of the building/distance I have to walk isn’t readily discernible from the parking lot, I have a policy that I always take my wheelchair.  The very last thing I want is to go somewhere new and get stuck, and have to try to send some stranger to get my wheelchair for me, or end up sitting somewhere crying in pain, too embarrassed to ask for help.  This means that the vast majority of people, upon meeting me for the first time, meet me in the chair.

My chair is not one of those fold-up hospital things.  I played wheelchair basketball, quite seriously, in college, and my chair is a custom-fit, ultra-lightweight sports frame with built in shock absorbers and triple-cross spokes.  It’s not the kind of chair you see every day, unless you live on a college campus or have an acquaintance who’s been wheelchair-bound for an extended period.  Upon seeing me in this chair, most people seem to assume that I am paraplegic.  I usually try to let people know that I can walk, especially if I think I might see them again in circumstances where I’m not in my chair.  This never seems to sink in, though.

Today, for instance, I went to my ENT appointment.  It was raining.  The ENT is inside an office in a larger building, with insufficient handicapped parking space.  Every time I’d been there I’d taken my chair in, because the doors on that building are heavy and hard to open when I’m standing, and the walk to the office is a decent distance.  But no handicapped parking means no striped-zone beside my car, which means I have to worry about whether I’ll be able to get my chair back into my car when I come back out.  My legs are working pretty well today, and I had energy despite running on 2 hours’ sleep, so I decided it made more sense to walk in today.

The people in his office had no clue who I was.  They even made me give them my insurance cards again, which they’ve never asked for since my first visit there.  I think they were doubting who I was, I’m surprised they didn’t make me show ID.  When the nurse (who I know I had dealings with there just a few weeks ago) took me to get an xray she wondered why I was worried about standing still for it/why I wanted to lean on something.  The only person there who recognized me was the doctor, who asked where my machine was today lol

It was a bizarre experience for me.  I’m the one that usually doesn’t recognize people.  I am at least partially face-blind, I can often recognize people in context by their hair, glasses, and other unique features, but not usually by their faces, and if I see them outside of their normal domain I usually have no clue who they are.

People generally tend to recognize me, though.  I’m that fat chick in the cool-looking wheelchair, or I’m that girl that  hobbles around on the  cane with the funky handle (my canes have fitted quad handles cuz I can’t grip a normal cane properly), or I’m that lady with the weird leg braces.

It was quite an odd experience to have the tables turned.  

Usually, if I show up walking around someone who hasn’t seen me out of the chair before they do a double-take, they give me a perplexed look and sometimes ask if I have a sister.  If I show up in a chair around someone that’s only seen me walking/hobbling/on crutches/with cane, they look horrified and ask me what happened (despite the fact that I warn nearly everyone I expect to see again that I use a chair quite a bit, that never seems to sink in either until they see it the first time, and often not even then).  I’m used to surprising people in these ways.  But it’s very rare to not be recognized at all because of the change in ambulation.

It was a nice bit of comic relief in my day, but it really didn’t make up for the giant nasal scope the doctor tried to ram through my brain.

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December 1, 2010 · 11:11 pm

On a Day Like This, Oh Lord, Help Me!

(This is going to be realllly long.  It was just that kind of day.)

I started off my lovely day by not going to sleep.  I had it planned so I could get about 4 hours of sleep before I had to head to Cincinnati to meet a friend and then go to 2 different neurological test appointments.  My ability to do math once I pass the "too tired" stage is seriously impaired, and I ended with 2 hours of sleep time.

Seeing as how I’d not taken my regular meds, in hopes that the tests would go better as a result, I spent at least an hour of that time laying there, too sore to sleep.

So I slept for maybe an hour, then my Mom called to wake me up (thanks Mom), and after hearing "be careful, conditions are great for black ice", I discovered that my watch was dead.  

Now, I’m one of those people who never takes my watch off… I shower with it on, I swim with it on, I do dishes with it on, and I look at it at least every 5 minutes, just to make sure it’s still there.  I can’t tell left from right unless I look to see which hand my watch is on.  I need my watch.  I was running too late to do anything about it, though, so I just stuck it in my pocket, put a place-holder bracelet on that wrist, and headed for Cincy.

My trip there went fine.  The traffic wasn’t as bad as I expected, the black ice only showed up a bit on the back country roads, and everyone somehow managed to stop without hitting anything or anyone when those three deer ran right out in front of us in the middle of a suburbian city street.  

I was on my way to meet @K_Dad for the first time, for brunch at a little breakfasty restaurant.  Google had me go through 3 unnecessary school zones on the way to the restaurant, but I think I managed to get there relatively on time.  

K_Dad’s a great guy, btw.  (I already knew that, but it was fun to have it confirmed :).  I talked way too much, probably, but he’d have to expect that of me, right?

The meal was pretty great (though, what kind of breakfast joint doesn’t have tomato juice? and no, V8 will not do), thanks K_Dad!.

The remainder of my day was absolutely horrible.

I spent about 30 minutes driving around town trying to find a watch battery before I had to get to my first appointment.  No luck.  

I did manage to make it to my appointment on time, though.  Where I got the pleasure of being  tortured by a neurologist.  

And when I say tortured, I mean that the technician hooked me up to electrodes, and shocked me with every last bit of juice her machine was willing to give her.  She spent a considerably amount of time baffled by the fact that there was no response from my nerves, and repeated the shocking sequences over and over again, until she’d convinced herself that the lack of results was due to my screwed nerves and not her incompetence.  

She repeated this process with each nerve she was tasked with finding, until she’d found the ones she could and given up on the rest.  The neurologist on duty then sunk 4" needles straight into my muscles (oops, straight in was the goal, "was that a blood vessel? ack, you’re gushing!") and forced me to clench those muscles against the needles, so he could read the impulse output that the needles picked up.  I wimpered, I yelped, I groaned, I coughed, and I believe, for the first time in my 21 years of being tortured by neurologists, that I actually screamed at one point.  The arm they were testing, after all, started the day in excruciating pain, and the needles just put me over the edge.  At least I didn’t cry.

They should have been done with that test, but the neurologist, who was sitting in the room during the whole 1st round of torture, watching the technician, decided to try to find that pesky nerve one more time, and shocked me for a while again.  Thanks, man.  It’s my own fault,  though.  I was over-tired, and a bit giddy, and trying to recover from the shame of screaming, so I told him he could go ahead and double-check if he felt the need.  Surprisingly, he got the same results.

So they finally finished with that and walked out, leaving me to get dressed… erm, they’d pushed my chair out into the hall somewhere earlier to make room in the tiny exam room we were in.  My shirt was on that chair.  I had taken my gown off before I realized this, but they were a little quicker than I, and both came pushing my chair back through the door just in time to see me standing there in my sports bra.  Awkward.

So after dressing and trying to recover my dignity with jokes, I stood there schmoozing long enough to find out how bad the test results were.  Pretty darn bad.  Completely useless, actually.  All of that torture?  For absolutely nothing.  

So I strapped on a wrist brace and I rolled my dejected, tortured, incredibly sore self down a floor to the imaging department to wait for my MRI that was supposed to happen in a couple of hours. They decided to be nice and try to work my MRI in before their next appointment.

And by being nice, I mean, they decided to lead me, my chair, and my freshly-electrocuted arm to the other side of the UC campus: through 5 different buildings, across carpet, around obstacles, up ramps, through tunnels, over the river and through the woods to the MRI machine we go.  Thank God it was all indoors.  I didn’t make it, my leader had to push me up the last ramp or two.

When we got there I was informed that I’d be spending the next 45 minutes or so laying face-down, with my right arm stretched out in front of me, palm up.  The poor tech must have spent 20 minutes finding a way to get me positioned that way.  It turns out holding my arm palm-up was not a feat I could accomplish, so I was aided by a million foam pads, pillows, sheets, towels, and anything else non-metalic she could find.

My shoulder started screaming about 2 minutes in.  My entire hand was numb after 5 minutes.  She gave me some cheap ear plugs, so the machine wouldn’t deafen me, but they apparently haven’t heard of muzac at UC.  Oh, and that 45 minutes?  It was really an hour and a half.   And it was freezing in there.

At least they got some good images, and they were nice enough to provide me with my own copy.

MRI: AX FSE T1      MRI: COR FSE T1 

Hopefully these will be more useful than the conduction studies.

They sent an escort to help me make my way back to that imaging waiting room 5 buildings away, where I settled in with my laptop, loaded up on every med I could possibly take without overdosing or rendering myself unconscious, and settled in to wait on them to kick in.  I felt remarkably well once they did, all things considered, and decided to head home.

My tired self thought the ceiling tiles in the elevator would... on Twitpic I realized once I got on the road that I’d waited for rush hour.  And that black ice Mom warned me about had settled in.  I got some gas and headed out.  It took me 45 minutes to go 15 miles.  My head was starting to bob, so I decided to stop and eat.

Knowing my arm was not really functional, I opted against my beloved Skyline 3-way and headed to Steak’n’Shake, where I wouldn’t have to use a fork.  Little did I know that Steak’n’Shake hasn’t heard of the ADA.  Their handicapped entrance?  They’ve turned it into an emergency fire door.  I needed to use the restroom, and going to a different restaurant was no longer an option, so I grabbed my cane and made the trek around the building to the ‘main’ entrance, and somehow narrowly avoided falling on the unseen ice that was all over their sidewalk.

After a quick ‘talk’ with their manager, who really, honestly, didn’t give a flying flip about the ADA (Steak’n’Shake will be getting a letter once I’m rested), I settled in.  The waitress took one look at me and said "I can see you’ve had a bad day, I’ll just leave you alone, just let me know if you need anything".  Who knew Steak’n’Shake’s chili was actually good?  They had to cut my sandwich into 4 pieces so I could eat it left-handed, and put my drink in a to-go cup because their glasses were too heavy for me to move, but all in all it was a good meal.  This was not in keeping with my day from hell, so I decided to dump A1 steak sauce all over myself just for emphasis.  

I had a nice little power nap while I was waiting on my check (which is to say, I fell asleep while waiting on the waitress to come back and tell me how much I owed her).  Afterwards I felt well enough to get back on the road, and I somehow made it back to my car again without falling on that ice.

A few miles down the road my day got really good.  Traffic came to a complete stop, just past the only suitable detour around a huge stretch of st rt 28.  10 minutes later I came to an intersection with a not-so-convenient detour possibility and decided to take it.  2 miles later I found a semi jack-knifed across all 8 lanes of traffic at the four-way intersection that was my ticket to freedom… so back to the highway I went.  I spent the next 45 minutes or so at a dead stand still.  5 miles up the road something happened, I may never know what (according to this link there were at least 5 wrecks in that area alone), but it did finally get cleared…

By which time I’d written half of this blog post, from my laptop which was plugged into an adapter which was plugged into my cigarette lighter.  You’d be surprised how many random houses are broadcasting completely unprotected wifi.

After sitting there for 45 minutes I only made it another 15 miles down the road before my head started bobbing again, so I pulled off at a McD’s to finish this blog entry, figuring it would wake me up enough to make the last 20 mile stretch home.

I finished it, hit submit, and in keeping with my no-good very-bad day, lost the entire second half of the post.  I swear, it was better the first time around.  Why I stayed up to write this is beyond me, I think I’m just too tired at this point to tell myself to go lay down.

And people wonder why I don’t like to leave my house.

Here’s hoping you had a much better day than I, and Happy Hanukkah!

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· 1:20 am

Tam takes a trip to the doctor…

So, I’m packing for a trip to my neurologist tomorrow to have a couple of tests (read: a torture session followed by an MRI) to see if the neurologist can find the entrapment in my arm so we can hopefully do the surgery and I can stop taking these massive doses of NSAIDs (and hopefully I can regain more regular use of my arm, and lose a lot of pain in the process).

I’m also going to visit a new friend while I’m down there.

Here’s what I’m packing:

  • Directions
  • My mp3 player filled with my accompaniment tracks and some other music – because singing to myself at full volume while on the road is always entertaining to those around me
  • My laptop – because I’ll have at least a couple of hours to kill between appointments, and Cincy has free wifi
  • A myriad of pills – because I cut back my meds in hopes of exacerbating my arm so the entrapment will be easier to find tomorrow – I’m gonna need drugs badly the time the appointments are over.
  • A wheelchair, crutches, and two separate canes – okay I’m not really packing these, they’re are always in my car anyway
  • A wrist brace, a wrist cuff, a removable full-arm cast, a sling and a pain patch – because who knows to what degree I’ll be able to move my arm after the appointments.
  • 1.5 Gallons of water – because when you’re likely to need that much water in one outing, you want it to be filtered.
  • Several spin toys, a dreidel, a couple of Christmas ornaments, and some PromoBlox – gifts for the friend and bribes for the doctors/nurses (keep them happy when you’re livelihood depends on their decisions, also they may keep the torture to a minimum)
  • My camera – because uhm, I have no idea, I guess I just feel like I’m packing for a journey, and who doesn’t take their camera on a journey?
  • My Bible – because it goes with me everywhere, and if I’m not feeling horrible I may try to go to Bible study on the way home.

 

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November 1, 2010 · 8:25 pm

When Worlds Collide

I’ve been debating about making this post for the past few weeks.  So that I don’t have to repeat a bunch of stuff, please read this rather short posts here and here before continuing.

What I’ve been debating about for the past couple of weeks is whether or not to write a post for “Autistics Speaking Day”.

I’m actually still debating right now, as I write this.  I have a habit of writing blog posts and then deleting them, so if you’re reading this then I guess I decided to follow through (most likely after writing and rewriting a few dozen times) :P

I don’t actually know who, if anyone, reads this blog on a regular basis, or who might read it today or down the line.  I do know that there’s a good chance that family members, old friends, people I met through my business, people from autism groups on twitter, and random strangers may all see this.  And that is the main reason why I’m reluctant to write this post.

I pride myself on being honest.  Completely honest.  I don’t lie (ever), and I try my best not to act one way around one group and another around another group.  Everyone that knows me at all knows that I’m a Christian, and you all have my permission to call me on things when you don’t think I’m living as a Christian should (though I may not agree with your assessment, I will take it seriously).   Being honest is as much a part of my belief system as it is a part of my core personality.  I’m not perfect, but it’s just not natural for me to be dishonest.

But there’s a place where “being perfectly honest” meets “sharing too much”.  Omission is not the same as dishonesty, unless it’s done to purposefully mislead someone.  For instance, you most likely wouldn’t run around telling everyone you have a bad rash on your bum, but if you say “there’s no reason, really, I just like to stand!” when someone asks you why you aren’t sitting down, you’re lying.

That line between being honest and sharing too much can be hard to find, though, sometimes.  And for me, it’s hard to find right now.  I want to share this information, for those participating in Autism Awareness Day on twitter, but I’m not sure I want to share this info for the people I’ve known all my life.  Many of which, I’m sure, will think I’m crazy.  I don’t want to open myself up to (more) ridicule, but I also don’t want to feel like I have to be two different people.

Several years ago I came to the conclusion that I probably have very high functioning Asperger’s syndrome (Asperger’s is on the autism spectrum, in case you didn’t know).  I came to this conclusion after a lot of research, though I’ve known about, and identified with, autistic people for most of my life.  Until a few years ago I never considered that I could be on the spectrum, because, well, I communicate too well.

I was weird in school.  I’m still weird.  Ask anyone that knows me (except Robin, who thinks I’m a saint for some insane reason), and they’ll agree.

I grew up feeling like crap.  I hated myself.  I wanted to die, sooner rather than later.  I felt like I was stuck in a world where I didn’t belong, I was in pain all the time (from a neurological disorder, see this post) and I just wanted to go back home to God, where I belonged.  (Okay, I still feel that way most of the time.)

But the only exposure I had to autism was classic autism (little kids, who I totally “got” and could play with for hours, but who were mostly nonverbal) and the “autisic savant” stories like the movie Rainman depicts.  I remember wishing as a teenager that my math skills were just a little more advanced (I finished college level Calculus I at Purdue in 4 weeks the summer after my sophomore year of high school, but my skills weren’t good enough to qualify as ‘savant’), but I never really thought about it beyond that.

I was the smart kid.  I helped teach classes when the teachers were negligent, I helped tutor other kids when they just couldn’t get something, or they were scared a parent would beat them for having grades too low.  I asked questions in class every time a teacher was vague, not because I didn’t understand, but because I figured someone else might not understand — and besides, it’d make the teacher better at her job.  I had exactly one friend in elementary/jr high, but I treated her like crap (I didn’t understand that’s what I was doing, I didn’t know any better).  I got along with most everyone else, I just didn’t consider any of them friends (and I’m pretty sure the feeling was mutual).

I always felt like something was wrong with me.  I never felt human.  I still don’t, most of the time.

I thought I was crazy.  Or everyone else was crazy.  Or maybe both.

I never dated.  I had a whole list of reasons why I never dated (I’d have listed them if you’d asked me), but it really came down to the fact that no one ever asked.

I simply could not comprehend why anyone would be upset about something sad happening in a movie.  It’s a story.  (see my previous post)

I never talked to anyone about how I felt inside until I was 16.  It really just wasn’t done in our family.  We would talk about things, just not the deeply personal kind of stuff.  Maybe other family members talked about that kind of stuff and I just missed it, I don’t know, but I don’t think so.

When I did try to talk about these things I found I couldn’t.  I met a guy named Ryan at church camp that summer, and he seemed really kind.  He was a counselor that summer and had the reputation for being a good listener, and I was desperate for help.  I tried to talk about what was going on in my head and all I could find was silence.  It hurt to try to talk.  I’m not sure what made him stay there, trying to coax it out of me, but he did, and I’m forever grateful to him.

At one point I gave up, and tried looking him in the eyes.  I’d never done that before, really looked someone in the eyes.  They say the eyes are the window to the soul, and I’d always felt an extreme need to protect that.  I would look at people, I would give “eye contact” but I would never hold that contact long enough for anyone to see inside.  I would look at a person’s eyebrows, or the whites of their eyes, or at something behind them.  I looked him in the eye though, forced myself to, and held the gaze, hoping that by letting him see he could just know what I was feeling and I wouldn’t have to try to find the words.  That hurt more than trying to talk, and I don’t think it worked.

I tried to contact him after camp, using letters, and found that it was much easier to write things than to try to say them.  I tried to explain the eye contact thing to him.  I think he misunderstood my intentions,  I’m still not sure.  But he wrote back, he kept in touch, he was even so sweet and helpful that he’d stand there on the phone for hours listening to me breath while I tried desperately to find the words for what I needed to talk about.  He stuck around for a while, always there when I needed him.  Then he broke off contact abruptly and completely.  I still don’t understand why, but there are two years I would not have made it through without him.  Ryan, if you ever read this, thank you.

I’m a pretty intelligent person.  I’ve only ever done one official IQ test and they never told me the results, but it got me put into a “gifted ed” program.  But the first time I took an “emotional IQ” test I think I scored somewhere in the bottom 30%.  That’s what got me started looking at Asperger’s.

And suddenly, perhaps, everything made sense.  Perhaps I make sense.  Perhaps I’m not just crazy, perhaps my brain is just wired differently than everyone else’s.

The “4 going on 40” phrase my mother always used when introducing me to strangers as a child suddenly made sense.  My inability to lie, and my tendency to take everything literally make sense.  The compulsion to hide in a corner and rock (which I rarely did, but often felt like doing) made sense.  My need to get lost in patterns, and my being completely mesmerized by geometric screen savers and spinning things made sense.  My inability to talk when upset made sense.  All those meltdowns as a child made sense.

Of course, just because it makes sense doesn’t mean it’s right.  I’ve not been officially diagnosed.  I don’t trust psychologists (for good reason, I could tell you some really interesting stories), and I’m over 30.  A diagnosis at this point wouldn’t do me any good, and the people who don’t believe if now would still doubt it even if I had a diagnosis in hand.

Besides, I have the most awesome friend in the history of friendship, and he has dedicated significant portions of the past decade of his life to helping me grow as a person, learn how other people think, and overcome some of my more challenging issues.  (Oddly enough, he doesn’t believe I have Asperger’s either, but he provides more help than I’d ever get from a therapist.)

So does it really matter if I have Aperger’s?  Probably not.  But would it have helped to know sooner?  Absolutely!

Had I known that my brain was perhaps just wired differently than everyone else’s, I might not have breached untold numbers of social protocols in my teenage years and my 20s (because I would have known to spend the time learning, then).  I might not have ended up in a situation that scarred me so deeply I had to spend 10 years recovering.  I might have realized decades sooner that stress sets off all of my autistic tendencies, and calling a good friend when I see it starting can save me an entire day of banging my head (literally) against a wall.  Ryan might not have disappeared on me.  I might not have treated my best friend like crap when I was in school, without even realizing I was doing it (so sorry, Jenny).

My life might be different, better, now, in so many ways, had I only known.  Just knowing it is a possibility, whether it’s definite or not, has helped me tremendously for the past few years.

So I guess I’m going to go ahead and post this, and I might regret it, but at least I was honest.  If you know someone who shows autistic tendencies you may be afraid to say anything.  If it’s a young child let it go, no need to freak out a parent.  But if it’s an older child, and it seems obvious, say something to the parent.  If it’s a teenager, say something!  Even just a simple “have you ever heard of autism?  Perhaps you should look into it.”  Sure, it might be embarrassing, especially if you’re wrong, but you never know how much grief you could save someone.

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March 11, 2010 · 2:44 pm

Thoughts on Sarcasm

Lately I keep starting blog entries and not finishing them, so I’m going to try a new thing.  From now on I’m going to give myself an hour per entry.  If I’m not done in 55 minutes I’m going to spend the last 5 rushing to get to the point, and I’ll post it at an hour, done or not.  Hopefully this will help me curb this annoying habit of half-written blogs in text files lol

I was in the shower today and instead of singing like I usually do my mind got stuck on sarcasm, why we use it, and how we can help autistic children (and others) understand it.  Here are my thoughts…

I think we use Sarcasm, primarily, as a defense mechanism when we’re annoyed.  When your child asks you for the 15th time when you’ll get there instead of ripping your (or their) hair out you just say "we’re already there, honey, can’t you tell"?   I could give a ton of other examples, but the ones i could think of all followed this same basic pattern.  Someone asks a stupid question, or makes a stupid statement, which we think they should already know the answer to, or we think they should know better, and instead of venting our frustration in a less-than-pretty way we pop off with a sarcastic comment.

When we use sarcasm with children it can actually be a really great teaching tool.  Most people aren’t going to be sarcastic with their infants or toddlers.  That’s silly, they can’t understand sarcasm, so we usually don’t bother (I imagine the same is true with non-verbal older children).  Besides, your infant/toddler isn’t likely to say something stupid anyway, and if they did they’re young enough you know they wouldn’t understand it’s stupid.  By the time most kids are old enough to start asking "Are we there yet?" 500 times in 10 minutes, though, or "Mom, are you going to feed us lunch today?", they’re also old enough to "get" sarcasm, or at least to start learning it.  So we, probably without conscious thought, start to use it with them.  We start saying things like "no, honey, I’m not going to feed you lunch, you aren’t *really* hungry anyway, are you?"… fully expecting their natural reaction to be shock, and then realization: "yes, I’m hungry!  you’re just saying that, aren’t you? are we going to have lunch *soon*?"  

Most kids can process two opposites well enough to realize that the mother who loves them dearly isn’t likely to just not feed them.  After they get over the initial shock they think about why you’d say such a thing, and it dawns on them that if Mom loves them so much, she’s probably not going to make them starve, and they probably asked the wrong question in the first place.  After enough similar instances (because kids take repetition to learn), the child eventually learns not to ask the annoying questions so often, life is less frustrating for everyone.

For autistic children, though, and children with other learning difficulties, this process doesn’t work so well.  If you tell an autistic kid you aren’t going to feed him, his reaction will often be panic.  He’ll be left with two opposites in his head "Mom loves me" and "Mom isn’t going to feed me lunch today".  This doesn’t compute.  "Maybe Mom doesn’t love me after all."  "What if she doesn’t feed me supper either?"  "But I AM hungry!  I wouldn’t have asked if I wasn’t hungry!"  And it can spiral from there.  Mom spends a while trying to calm the child and make sure he understands that she does love him and she will feed him and she was just being "sarcastic" she didn’t mean it… eventually he calms down, but without the ability to read body language, or make the jump that explains what caused Mom to respond sarcastically, he’s left not understanding why his mother suddenly lied to him, or when it’ll happen again.

I think most parents with children on the spectrum have been through this type of situation, repeatedly.  It’s not that you’re trying to annoy and confuse your children, it’s just that sarcasm is a natural response to frustration, and stopping it isn’t easy.   So what should you do?  I for one do not think you should train yourself not to be sarcastic.  

I don’t think that helps either one of you.  That child, eventually, is going to have to be let out into the world, so to speak, if he’s not already, and he will encounter sarcasm there.  This is a life skill he needs, and it will help him in a lot of areas, he just needs the tools to understand it.  

Most children, no matter how bad their autism or other disabilities may be, aren’t incapable of learning things, you just have to approach them right.  

When you find yourself being sarcastic with your child (and if you don’t notice beforehand, his reaction will tell you you were sarcastic), after you calm him down, take the time to help him understand what happened.  Explain that you were being sarcastic, define sarcasm for him again, but don’t stop there.  Remind him of what he said, and explain precisely why it was frustrating to you.  Explain that your reaction to that frustration was to say something you knew he should know wasn’t true, and explain that that was supposed to trigger him to think about what he asked/said and whether it was necessary.  Do this every time.  Eventually he’ll remember to think about what he said before panicking, and he’ll begin to internalize the concepts behind sarcasm.  

It may take a while.  Just like it can take a (long) while to get a child potty trained. But once your child grasps sarcasm watch out, he’ll probably use it a lot, and better than you do (lol).

If you have further thoughts on this, or you think I’m wrong, feel free to share in the comments.  I’m certainly not a professional on the subject, and I’m not even a parent, but I am good at using sarcasm, and I think I understand autistic kids better than most.

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February 1, 2010 · 1:22 am

What the heck is wrong with you anyway?

I don’t imagine many people read my blog, but since these go to Facebook I figure some people will see this at least… and I know a lot of you have been wondering for years so I figure I’ll just explain it once here so you don’t have to ask and I don’t have to explain it for the umpteen-millionth time and have you staring at me like you didn’t get it anyway.

What’s wrong with me?  Why do you see me walking one day and in a wheelchair the next?  Why am I always on about my arm not working when I’m clearly using it while you’re talking to me?

Odd as it may seem almost no one I know asks me that.  I know everyone wants to know… the kids ask (nearly every time I spend time with them) but the adults almost never do.  When someone does ask I think the answer is ignored more often than not.  It gets frustrating for me and on bad days I’m likely as not to just give an exasperated sigh and spout off a bunch of long medical terms that you won’t understand, knowing you’ll respond by going "oh" and walking away.

So here it is, in more-or-less plain English.   I’ll bullet-point it so it’s easier to read.

What’s been wrong all along…

  • My immune system is eating my nerves – not my brain or my spinal cord but the little nerves that tell the muscles in my limbs and elsewhere to move.  
  • My nerves keep trying to repair themselves by rebuilding the lining, only to have my immune system attack again.  This means my nerves look like someone chewed them up and spit them out.  They are a mess of scar tissue and rather resemble what happens when a dog tries to devour an electric cord.
  • As a result, the signals that my nerves try to carry to my muscles get messed up.  Think of plugging in that electric cord the dog just chewed up – the electricity might arc outward and spark a fire, it might not get to the device it’s supposed to feed at all, or the signal might be sporadic.  Consequently commands from my brain telling my muscles to move may get lost along the way (if I try to move my foot chances are my leg will want to move first), cause spasms, and arrive very late (compared to normal ppl).
  • Since nerves carry pain signals back, as well as sending commands out, this means I have constant pain caused by this damage.  I also have constant pain caused by the cramping that’s a result of lost messages.  The less I try to move though, the less cramping I’ll have.
  • If I use my nerves too much the damage gets worse.  This is why my hands started to atrophy in college (when I was using my wheelchair 90% of the time and playing w/c basketball).  Carefully avoiding overusing any nerves is why I, more or less, have no strength issues right now.
  • After years of taking nothing but Ibuprofen, and after many more years of experimenting with every drug on the market I found that a combination of a seizure med (which helps to stem the constant overflow of pain signals coming in) and a muscle relaxant (to help keep my muscles from reacting to the signals that weren’t intended for them e.g. my leg cramping when I’m trying to use my foot) were able to help me get the pain in control enough to function on a normal basis.

What happened to my right arm:

  • A few years back the latest round of damage/repair to my nerves caused scar tissue to build up too much in a little tunnel that the nerve in my arm runs through near my elbow (that’s the guess for the cause anyway) and I woke up one morning, in excruciating pain, unable to use my right arm.  
  • Because the amount of damage my nerves already have, doctors are unwilling to do the simple surgical procedure that would open up that passage and unblock my nerve (is similar to the procedure done for carpal tunnel syndrome).  Since they won’t do that, the only solution is to take massive doses of anti-inflammatory drugs (ibuprofen) — the eating/repairing of my nerves causes constant inflammation around the nerves themselves — which shrinks the nerve just enough that it’s not being pinched and I get function of my arm back.  
  • If I use my arm at all the muscle starts to tighten around the tunnel and causes the nerve to be pinched again.  I can handle about 15 minutes light use of my forearm muscle before this happens and my arm stops functioning.  Once this happens, I have a removable full-arm cast that I put my arm in overnight to force the muscle to relax completely — sometimes it takes more than one night of this before function returns.


How all this affects my day-to-day life:

  • When I remember my meds on a regular basis and I’m careful not to overuse any nerves I can more or less depend on my legs and arms functioning for daily activities.  On good days I can walk around the house almost normally, write about a paragraph, and fix a few meals for myself without any real problems.  In the past year or two I’d say I’ve had good days about 2/3 of the time.
  • On bad days I may have problems even standing, I may not be able to hold a pencil – let alone write with it, I may not be able to lift a pan.  I almost never leave my house on these days.  Most people probably don’t even know that I have them.  I’m often in so much pain I can barely put a sentence together.  These can happen when I’ve missed a dose of my meds or just out of the blue for no reason I can find.  
  • Thankfully even on bad days I can usually type well.  I cannot type on a keyboard that has ‘soft’ keys, but as long as the keys have enough spring to hold my fingers up when I’m not pressing down, and to push my finger back up after I’m done pressing, I do not have trouble.  The exception to this is when that nerve in my arm is trapped – then I can only type left-handed, and the effort of moving around the keyboard with my left hand tires it out very quickly.
  • In an effort to not overuse my nerves I opt on the side of caution as often as possible.  If there’s even a chance I may have to walk far or stand for very long I take my wheelchair.  If I know I’ll have to be on my legs much I’ll wear my leg braces.  If I know I’ll be sitting for a long time I take my wheelchair (my chair is custom-fit to keep my legs and feet at angles that lessen the spasming and pain). 
  • Because my arm is messed up now I cannot use a cane as much as I used to, and I almost never can use my crutches.  I have a left-handed cane (I have to use canes with special handles or my wrists get too stressed) but have trouble using it much because I’m not coordinated with my left hand lol. 
  • Between the meds I take and the work my body is doing constantly attacking and/or repairing my nerves I require a lot of sleep.  I probably average 10 hours/night but when I’ve overused my nerves sometimes I’ll sleep 2 days straight.  This isn’t really predictable, though I know if I overdue it I’ll have to sleep a lot the next day or two, sometimes I’ll sleep for 16 hours with no clue why (I just wasn’t capable of waking myself up).
  • Sometimes I will "crash" in the middle of doing something.  Usually this happens if I’ve ‘overdone it’ but sometimes it’s completely random.  I have fallen asleep at work, in the shower, at friends’ houses, at dinner, etc.  It doesn’t happen very often, and is usually accompanied by a slight fever.  I can recognize it’s coming and have just enough time to stop what I’m doing and go lay down (or pull over to the side of the road if I’m driving).  Thankfully I usually can wake myself up after 15 minutes or so when this happens, but it’s very awkward if anyone else is around.
  • I know my chair is an inconvenience for other people.  Most people I know do not have wheelchair accessible houses, and riding with others is a real hassle if I have to take a chair along.  For this reason I generally avoid doing anything unless I know I’m having a really good day and can afford to walk and/or use my cane, I know my pain levels are low enough that I can be sociable, and I’m well-rested enough that I probably won’t "crash".

So there’s way more than you ever really wanted to know.  And now you see why I always try to give a short answer and you’re left wondering what’s really wrong anyway.

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February 6, 2008 · 11:55 pm

hibernation

My sister’s oldest girl came to stay with me last week, which was great!!  I love every opportunity to spend time with kids, especially my nieces and nephews! :)  I got to play teacher for the week, since my sister home-schools.  I had a blast with that too.

The only problem is, after just 4 school days I had to sleep 34 hours straight (straight!) to recover to a halfway normal state, then another 16 hours the next night, and I STILL almost fell asleep in my chinese food at lunch on Monday. 

Now granted, my sleep schedule was off before she got here, so I wasn’t getting as much sleep as usual during the week, and my arm had gone out again, so part of the sleep was still my body trying to recover from that, but still… I’d have to be crazy to ever think I could take care of a family.

I’ve got SO much work backed up right now, and I don’t even have a job!  I wonder how much I could actually get done if I could work like a normal person, without having to go into hibernation for 3 days after every 4 days of work.

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