Fish Out of Water

This is my first essay for my nonfiction class… 1,000 words in answer to the question “why creative nonfiction?”

 

I take in a gulp of air and shut my eyes tight before I plunge beneath the surface.

One, two, three…

It starts to feel like my brain is tingling from the inside.

Four, five, six…

I’m not counting in seconds, not in minutes, but in hours.

Seven, eight, nine…

I search for anyone, anything who will ground me through my ever-increasing internal chaos.

Ten!

When given the cue, I cannot break the surface fast enough, gasping for breath.  I’ve done this thousands of times, and yet, after twenty-five years of daily descents, I am no more sure that I will survive the next one.

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I’m really not a writer.  Writers have readers.  I write because it’s the only way for me to get from one day to the next without semi-spontaneous internal combustion taking effect. 

I’m not a writer.  I’m a processor of the world, an organizer of experience, and, certainly, a weaver of words.  Much like typical people have no need of the world to tune into their every thought as they learn and grow by connecting this neuron to that one and forming new pathways, it matters little to me whether others read the ways in which I develop my sense of myself and the world.

My memory goes back to before my first birthday.  Prior to sometime much later, though, my memories are only sensory; I remember smells, tastes, and sounds… the painting on the end of my crib, my sister’s writing on the chalkboard, and smell of the air sanitizer at my daycare… but I really cannot remember almost any my thoughts and opinions.  Without a way of processing the world and my place in it, I had no means of forming these memories.

I was an early and voracious reader.  I had sight words in my second year and devoured The Hobbit in third grade.  Yet, my language development was uneven; I asked my mom several years ago when I began to ask “how are you?” to other people, and she responded, “Lyd, we’re still waiting.” 

I taught myself to type in fourth grade and took to instant messaging much like I take to cats and pink and Diet Mountain Dew.  In middle and high school, I would form rather close friendships with kids in my grade online, but when we met in the hall or in class, I was absolutely silent.  I didn’t understand why I had so much language ability… and yet, simple conversation evaded me entirely.  I could lecture, for certain, and at home, my mom was either asking me to say something, anything, to anyone, or, conversely, for-the-love-of-all-that-is-good please stop chattering.  My sister (to this day) answers my every conversational volley with either, “I can’t hear you!  Speak up!” or, “Geez, Lydia, I’m right here!” 

I kept no friends from high school and made none in college until my senior year.  I met Leigh in late August, and one rainy evening in mid-September during which I had dragged her to the gym with me, she asked, “Hey, have you heard of Asperger’s?”

“Yeah,” I said.  “We learned about it in one of my education classes; I think I have it.”

“Um, I know you do.”

Several months later, I met with a clinical psychologist who had oddly-perfect teeth and a heavily-gelled comb over.  I left with a diagnosis of Autism Spectrum Disorder.  It was January 7, 2009.  I was 21.

My final semester of college began just a week later, and with it, so did the crumbling of my world.  I had pushed so hard and tried to just be normal for so long that I simply, one day, could not do it another minute.  The social and communicative demands of student teaching put so much stress on my atypical neurology that I became violently ill.  After two weeks, I dropped student teaching in order to take an “alternative assignment” with more support, but upon doing so, I had to forego any hopes of a teaching license.  My plans for the future had burst. 

I stumbled and staggered through the months until graduation, every moment ready to fall over the edge and into total burnout.  Rather than all at once, it came on gradually, and by the time I went home in May of 2009, I was a vacuum.  Everything went in; I heard, I thought, I felt.  Nothing, nothing came out.

Nothing came out… unless my hands were on the keyboard.  It became my lifeline.  I used it to communicate anything more complicated than simple questions-and-answers for over two years.  During that time, I also began to blog, and I was surprised when more than a few parents of children with autism were interested in my writing.  I was able to articulate why autistic people do the things we do that strike typical people as downright odd.  “Just as a newsflash,” I would say, “I think you’re odd.”

During the last two years, I have read dozens of books about autism and connected with others (mostly online, of course) who have it.  As I learned how my mind worked and how I could make myself more comfortable in this world, I slowly came out of my shadowed state.  My typing, mostly in the forms of blog posts but also in books comprised of short essays, emails, conversations, and texts, has been the lifeline that connects my brain to this world.  Every moment I don’t spend at my computer is like holding my breath under water.

I take in a gulp of air and shut my eyes tight before I go out for the day.

One, two, three…

I run errands with my mom.  Grocery store, Target, post office.

Four, five, six

Doctor appointment and drop off the dry-cleaning.

Seven, eight, nine…

The light, the noise is so overwhelming, it’s become unintelligible.

Ten!

Breathe.  I’m settled in my comfortable spot with my favorite blanket, with my fingers at home on their keys.

 

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Autism Positivism

I got back late Sunday night (as in 4 AM) from my trip to visit one of my closest friends for her 21st birthday.  She also has autism, and so do most of her friends.  Her party took place at a pottery studio where we painted our own pottery.  Not typical for a 21st birthday party, but, in my opinion, it’s also totally awesome.  I got to meet her friends, and I’m not even kidding that I wanted to take them all home with me!  These guys and girls were all late teens or young adults and were also the sweetest, kindest, most genuine group of “kids” I’ve ever met.  I have never been that comfortable in a group before.  No anxiety!  That’s saying a lot!

I’m in a tough place, autism-wise.  It’s hard to tell that I have it, right away.  I have odd voice intonation, I get stuck and stutter a bit, I don’t do eye contact, I constantly lose my train of thought, I growl (out loud!) when I get frustrated (which is often), and I overall seem some years younger than I am.  I get asked what grade I’m in fairly often, to which I answer, “I’m in grad school!”  The reason this place is tough is because people meet me and expect typical… then, when I melt down, or when I can’t handle a change in routine, or when I do something completely socially unacceptable, or when I talk about my love of pink and Disney… well… they either really don’t know what to make of it (which is harmless, really) or, if my words/actions/behavior was upsetting, they get really, really angry.  They see typical and, when they don’t get typical behavior, they’re angry with me because they expect that I am capable of it, even though I’m not.  Even though I am sort of able to socialize with typical people, it’s super hard work and I mess up a LOT.  For that reason, at Chloe’s party, I discovered how awesome it is to hang out with people who don’t care if you’re typical, atypical, or purple… they’re just plain friendly.

After hanging out and talking with the group, I got to thinking of all the awesome qualities among them.  The genuineness, like when I held a door open and C said, “Wow, thanks for holding the door, Lydia!  That’s so nice of you!”  Or the way the conversations were opaque; these kids say why that mean and mean what they say.  No innuendo or reading between the lines.  That made me so much more comfortable, and I actually understood the humor and didn’t feel confused half the time or like people were laughing at me.  These kids accept everyone for who they are.  They don’t care if your clothes match, if you just spilled something on your shirt, or if you need someone to cut your food at the dinner table for you.  

Here’s my revelation: What if we defined autism by its positives?  The diagnostic criteria are a list of negatives.  Lack of, absence of, inability to, failure to.  What if we defined it, instead, as presence of, talent in, penchant for, love of?  

Preference for concrete and literal language.

Expert in a specific area of interest.

Inclination to use metaphorical language.

Love of repetition and routine.

May lean toward interests of variable intended age levels.

Gifted in being loyal and genuine in relationships.

Propensity for honesty in all situations.

Strength in detailed memory.

And my favorite: Disposed to AWESOMENESS.

 

That’s what I see in the people I meet who are on the spectrum.  I absolutely cannot understand why “they” say we lack social skills, because the most polite people I’ve met have all been autistic!  It’s not a “lack” at all; it’s a difference.  I’m so sad that the experts are not able to see the value in that difference.  

One thing I’ve been learning is that other people’s opinion of me, often, really doesn’t matter.  I was sleeping this morning, and one of the aides was helping my 88-year-old roommate get out of bed.  I was sort of awake, since they were talking.  The aide commented that I was still asleep, and my roommate said, oh, yes, she slips in.  The aide laughed and said, “Well, that’s the nice way to put it, I guess.”  I think she was trying to say that I’m lazy.  Um, given that I’m 25 and live in a nursing home, and given that I was just away for 4 days, one of them spent at Cedar Point, and that I was up until 5am night before last, I don’t think lazy has anything to do with it.  But, I generally sleep until 2 PM even if I went to bed at 10 PM.  My body is out of whack.  It makes me tired.  If I were healthy, I wouldn’t, uh, LIVE IN A NURSING HOME?!  I wanted to snap at her but couldn’t wake up enough to do it.  But, then I was glad that I didn’t, because the thing is that… it doesn’t matter.  Let her be crabby.  It doesn’t have to affect me.

That’s how I feel about some people’s perception of autism, too.  Let them think what they want to think. I know that there are so many people with autism out there being awesome that we will spread the message around that autism isn’t all bad.  As for the naysayers, my hope is that the awesomeness will overtake their negativity.

So, friends, keep on spreading the awesome!

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Step into My Shoes

I got up at the “butt crack of dawn” (a lovely Lydia-ism) this morning to travel by bus to Toledo. My best Asperfriend is turning 21 on Saturday, so I can’t miss out on such a big day! The bus has lousy Internet… So, I can’t download the portion of my audio book that was skipped, I can’t stream movies, and I can’t access iTunes to download a movie. I’m writing this post, but I’m not even sure it will save until I can post it. I’m also not sure I’m anywhere near awake enough to write at all!

All of that was exciting info but has next to nothing to do with my post. My challenge to myself is to tie it in somehow by the end.

Ooh, I got it.

Okay. So. Hi!

Haha. I’m not sure you can tell what a goofball I really am through my posts and such. I crack myself up all the time, although usually, I’m the only one who gets it. Actually, I’m often the only one who cares that I’m talking. That’s totally fine with me!

Now, for real, focus.

My mom came to get me yesterday. It’s always a challenge to, first, get me awake when she’s there, but even if I am awake, it’s tough to time getting ready for her to come. I have a bunch of medical stuff to take care of in the morning, and my nurse has to do some stuff so we depend on her schedule. Usually, we end up hanging around while I wait for meds. Actually, this usually means I finish scrolling thru Facebook while my mom refolds the towels in the bottom of my closet that I’ve wonked during the previous week.

Anywho, nurse comes in with meds and I do my routine while we’re all talking. My day nurse is a-MA-zing. I stitched her a “super nurse” thing… Beats me how to add a photo of that from my iPad but I will try to remember to do it from the laptop. My mom and my nurse were talking when I opened my mouth and blurted out something out of left field. I said, oh, sorry, I know I just interrupted, but I am so horrible with timing and I didn’t mean to interrupt! They didn’t care at all, but, sometimes my tendency to interrupt is kind of inappropriate. I’ve noticed that autistics sometimes seem like we have two totally independent conversations happening at once, like we talk at each other instead of with each other. Even online, my Asperfriend Chloe and I do that, and you know, it doesn’t bother us a bit… But typicals often feel ignored, I think. I hear you… But sometimes, your words don’t “click” right away… When they do, I will respond.

I made a cake for my brother-in-law’s birthday yesterday, and after a full day of nonstop running around to get ready for my trip, I hit a wall and just wanted to crash by about 6 pm. By 8, I was done. I wanted to do the cake thing then go to bed for my butt-crack-of-dawn morning ahead. My whole family was watching tv, and I stood up and said, “Listo? (Spanish for “ready”). I’m listo!” No one moved. “Cake? Am I the only one?” Um. No one reacted. I got up and went into the kitchen to get ready.

I was trying to figure out if I was being rude somehow, if they heard me but were ignoring me, or if they didn’t hear me. If they did and I was missing an obvious social cue and when in and repeated myself, they’d be annoyed. But if no one heard me, then they’d watch tv all evening. They were really into a show… Not a show they watch usually… So I didn’t think that was the problem.

Welcome to life as an Asperkid. It’s a constant game of detective work, because you just don’t know naturally. Was a not loud enough? I don’t modulate my voice well at all. I can be way too quiet or way to loud and have no clue. Was my timing wrong? Sometimes, often. I just don’t have enough “presence” so no one registers that I spoke. Did I need to wait? How long is enough time? Do I try again?

This is with my immediate family, so imagine when it’s people I don’t know as well and have more worries. I never know what social cues I’m missing or am supposed to know because, duh, it’s super obvious, of course. Yeah, to you, maybe! Imagine if I told you there were ten things you could say or do. No clues as to what they are. You start with 100 points and lose points for each offense…but each is worth different values. If you drop below 50, I will flip out at you and maybe never speak to you again.

Would you risk wanting to be my friend?

That’s exactly how most of my relationships feel. I agonize over every interaction, every word, every little thing.

Aside: The guy in the seat in front of me is sleeping… And I am kicking the heck out of his seat. I have neuropathy and have to move my legs every few minutes to avoid pain, but I feel really bad. Also, I forgot that just because I’m wearing headphones and can’t hear myself burp, doesn’t mean everyone else is and can’t. Oops.

Now here’s the fun part of this writing for me, where I get to tie in the part about going to see Chloe.

My absolute favorite people in this world are the ones who say, to heck with points! My mom, my kitties, my nurse, my typical best friend Leigh, my Asperbestfriend Chloe. They don’t take my mess-ups personally. They do tell me, usually, when I goof, so that I learn what most people expect, but they don’t take any offense. I have a pretty kind heart. I almost never mean to hurt anyone. But, because of my unique ways of socializing and communicating, sometimes I say things that sound awful but aren’t what they seem.

It’s hard for me to imagine a sweeter feeling than that kind of acceptance.

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Seeing is Disbelieving

I’ve been waiting nearly two months to see a GI doctor.  Constipation is all something to laugh about, until your large bowel 100% stops moving.  Until you don’t “go” without significant intervention, every time, for over three months.  I won’t go into any more detail about what I’ve been through and go through to avoid the gross-out factor, but I’ve been quite literally counting the days for these appointments (“these” because I had two appointments scheduled, each with a different doc in a different hospital systems).

I had an “expert” GI doc at a major medical center… only, he was completely unable to treat me effectively and flat out ignored my issues.  We are well aware that my stomach doesn’t really move food anymore; I get much of my nutrition, fluids, and meds through my feeding tube.  He just refused to even give advice about the other issue.  In the year that I saw him, I think I got under his skin.  He is a textbook kind of guy, and, well, my body didn’t read any of the textbooks, so when you plan interventions, let’s just say that it’s a safe bet to expect freaky results.  The doc finally threw up his hands and said that he thought I was feigning my illness.

Turned out my PCP thought the same thing… and my family kind of did too, and while inpatient, the word Munchhausen’s was thrown around.

I sobbed, and I sobbed.  All I would say, over and over, was, “But I don’t lie!”  They told me that I was lying to myself, that maybe I didn’t think I was lying, but that I had to be.  They told me that I love medical stuff and light up when I talk about it… and yeah, that has been true for pretty much forever.  I didn’t know what to believe.  I tried to explain why I did what I did but was not able to do that to any real effect.

Yesterday, I saw another GI.  She came in and basically said she make me normal, no more tube, eating food, pooping, the whole bit.  She went on about this med and that med and this test and that test and maybe this surgery and… I started to freak.  I dug my heels in.  I got upset, saying no, I WANT my tube, and, I don’t want to do that test, and my insurance doesn’t cover that (we’ve already tried), and… basically, I argued, which my family noticed tends to be my way with doctors.  So, they see a girl who doesn’t sound like she wants to get better, refuses treatment, and knows nearly as much as they do about her conditions and the options for treatment, the side effects, and what the insurance will cover.  They see a crazy girl.

For a little while, I thought maybe I was crazy, but I didn’t think I was, but since everyone else said I was… I was utterly confused and more than a little upset.

When my mom and I left the appointment yesterday, we talked for probably the next three hours about what had gone on.  She told me that the doctor was trying to be positive when she said I’d lose the tube, but that she didn’t mean right away… she meant when I was ready and only when I was ready.  We talked about the fact that, although the doctor made the procedures sound like they always work and have zero side effects, that we know that isn’t true and that I don’t have to dive head first into everything.  She said yes, that the doctor probably thought I didn’t want to get better… as we talked, I could tell my mom started to see underneath what was coming out of my mouth under the stress and realized there was a lot more going on.

I emailed my mom once I got back.  Here’s (most of) what I wrote:

1.  I didn’t feel well today… I had that wonkiness I used to get in the evenings (tired, light headed, hot flashes), plus my bee sting hurt, and my stomach hurt.  I also started to get really tired, and we were under those dang fluorescent lights a lot today.  The result was that I was just out of whack.  Body out of whack tends to beget social withdrawal and struggling to communicate effectively.
 
2. I heard myself arguing with the docs today and I finally understand why I do it.  It’s the same reason I fart cross ways (that’s a family expression but I left it in for reader’s amusement on our account!) with everyone else, too, which is because they are not following MY plan and MY script.  When I feel anxious about something in the future, I start to imagine how it might go in my mind, and over time, I develop sort of a script for how it is supposed to go down.  When someone deviates, I cannot even allow myself to back up and say, hey, this sounds like a great idea, because all that is in my mind is that it is the WRONG idea.  And that isn’t something I’ve been able to communicate very well as of yet.
 
3.  That anxiety was all I felt during the appointment, for that reason, in addition to the thing about losing the tube before I’m ready.  I do NOT want a tube that I don’t need!  I just want to be sure I don’t need it, first.  Once we talked through things and I was reassured of that, I felt somewhat better, and now that I’m in my space, with the lights off, feeling way less overloaded and anxious, I’m actually really excited about the prospect of improvement.  I never wasn’t, I just was not able to communicate that.
 
4. I am frustrated to pieces because I am just so horrible at communicating, and the result is that I don’t say what is for real, my real thoughts and emotions and real reasons for my words and actions.  Then, it looks like I’m completely crazy… I want you to know that even though I’m well aware of how it looks, and of my stupid behavior, I am not able to stop doing it, at least not yet.  I saw every bit of it today but was just TOO out of whack.  Conversation goes too fast, people are too loud, the lights, my arm, I feel wonky, it’s all just… my brain just short circuits.  
 
5.  If my behavior doesn’t make sense or I start to be difficult, PLEASE give me a break and maybe stop the conversation until we can type.  That is REALLY the best way of communicating for me.  I get revved up the more we talk and everything falls apart.  I am able to explain what is going on when my body isn’t out of whack and overwhelming my neurological processes, whereas if you talk to me verbally, you will just get whining, complaining that I don’t feel good, zoning out, snapping, and a WHOLE lot of digging my heels in.
 
6.  Here is what I want to do: I want to go forth with the bowel cleanout and the scopes, then I want to start the Amitiza samples and see what the deal is with insurance and Linzess.  If you are willing and comfortable paying for the domperidone, I might be willing to try that.  If it comes to that surgery, I don’t think I want to proceed… that surgery is permanent.  There is no going back.  It is far from without side effects and can really make things worse than they are right now. I don’t want to get into permanent.  I understand that other people don’t understand my comfort level with my hardware.  All the reasons I have cited… base line decent nutrition, fear of having to redo the surgery, and just the fact that I feel like what I’m doing is livable.  If I had a surgery that made it so I couldn’t eat at ALL?  That would be way less livable.  This… I can handle, even if it’s not ideal.  
 
……..
 
I was so worried about what my mom thought about what I perceived was wretched behavior during the appointment.  The problem is that I come across as very, very intelligent and capable… and it’s basically impossible for anyone (who isn’t my mom or my BFF, Leigh) to even fathom that what is coming out of my mouth is basically a hot mess.
 
When I met with the fellow, the first thing I told him is that I have ASD and I am socially different and struggle to communicate what I really mean, sometimes.  The problem is that, when it actually happened, I am 99.9% certain that the doc didn’t make the connection… because I SOUND like I am in control of my words and actions, when I really feel fuzzy and sensory overload and am not steering the verbal ship anymore at all.
 
My absolute biggest concern was my mom, though.  If my mom understands what’s up in my head, then she does an amazing job of making that understood to the doctors.  I know that at some point, I will have to learn to function on my own… but guess what?  Now is not that time.  I’m NOT ready.  If my mom can no longer do it and I still need help, then we’ll cross that bridge later.  My mom is amazing at helping me and supporting me to do as much as I can on my own, but when I get in over my head, she either supports me to smooth things over or steps in.  
 
My mom’s response to my email was amazing: 
 
My dear Lydia,

I thought you did pretty good today. You have nothing to be ashamed of, your behavior was fine. It helped so much when you explained to me where your fears were coming from and I can see now your hesitation. I should have thought of that sooner and I apologize for my insensitivity.  I did not stop to think about you went through to get to this point.  Your are stomach issues are stable and manageable now and you fought so hard to get to where you are.

You should proceed cautiously one step at a time and rightly so, not being forced into anything. We did a lot today but it was all good, you did a great job hanging in there. Sleep tight. Kitties are fine. Goose back on her old bed in the turquoise room. Gave her some pets.

ILU,
Mom
 
I think my mama deserves to be in the Autism Moms Hall of Fame 🙂
 
I will either leave a message for the doctor to let her know that I AM excited about the prospect of getting better but that it was news I wasn’t expecting and that threw off my ability to communicate effectively, or I will tell her when I see her again.  
 
I repeat, as I said in my last post, that THIS is why autism awareness and acceptance matters.  Because people in the medical field say oh, yeah, autism, great, we’re fine with that!  But, when autism effects my real-time, real-life issues during an appointment, they don’t have enough autism awareness to actually recognize that it is behind the behavior.  That is a very disconcerting and dangerous disconnect.  
 
Maybe I will print this or write up a thing to put in every one of my medical charts.
 
Takeaway message is this: Autism awareness has to be more than teaching people that autism exists; we have to teach them (medical professionals more than anyone) how autism affects real-time, real-life situations.  Also, even highly verbal people with ASD can have a very difficult time communicating… I am ALL about emphasizing strengths, but don’t do so do the detriment of supporting us in our weaker areas.