Sunday, July 29, 2012

I am Goodbye

Every once in a while, I pull a 3rd shift. It's not totally unpleasant. I worked nights for years in restaurants and bars.I'd stay up rambling until sunrise. I've been seen teetering down the street at daybreak, becoming damp with morning dew as I shiver my jean jacket-- wondering how it was only 10pm five minutes ago. Now, as a mother of twin five year olds, I can't hang like I used to. I even fantasize about taking a brief nap around 6pm. But, if my daughters feel I am in their vicinity, there will be no rest.


When working a 3rd, I usually leave as the rest of the house sleeps-- my children in their beds covered with stuffies and my husband on the couch in front of a baseball game. As I pull out of the driveway, I remember how much I love that time of night. After all the neighborhood bedtimes, yet before the drunks barrell home from the bars. My eyes adjust to catch the rustling in the bushes and the glow of all the other noctural eyes. I pick the CD or radio station necessary to force the blood to my fingertips for the rest of the evening. I stop by one of the only coffee joints still open, and double fist it. 


In spite of these chemical and environmental stimuli, I usually start to drift off around 5am. Doesn't matter if I am sitting or standing, I start to slip down that slippered slope of sleep. Where I work at the hospital, it is protocol to call a Code Blue if a non-patient hits the skids. So, after doing my 200th lap of the unit, I start to self talk,"Oh, damnit! They're gonna have to call a code on me! I can't... do...this." Yet, I make it. I stumble out into the dawn, eyes feeling as though they've been sandblasted. I see all the fresh, well-rested faces. I feel like an alien or a ghost.


I would like to say I then go home and go to sleep. But, I don't. Usually just as I slide out of my scrubs into a tank top and boxer shorts, I hear the first cough resonate from the girls' room. They feel me. I make the choice to brew a pot of coffee versus catch 28 1/2 winks. I then spend the rest of the day hoping I don't fall asleep at a redlight like a cat sitting in the sun-- with my kids in the car. Yeah, I have actually pulled the "I'm just gonna close one eye... just for a second."


I try not to work 3rds too often-- I try not to work them at all. 2nds are good. I get my day. I work my evening. I go home and stare to something (a book, a computer, a drawing, a Korean horror film) until approximately 1am. I go upstairs. I check on my children. I brush my teeth and empty my bladder once last time. I stumble to bed. I am alseep within two minutes of thanking the great beyond for my children. Fast forward six hours (sometimes with memoriable dreams of interplanetary structures, sometimes with a sufficating pillow knock out lapse)-- and I start all over again.


I live by my calendar. I don't have a schedule that is anywhere near routine or regular. It sometimes works to my advantage, because I can manipulate my days off and shifts with a certain degree of success. I also need to be aware of what I have planned for my children. I try to be cognitive of my husband's band commitments and other social pursuits. I have minimal social engagements. Every once in a while, I go to a friend's house in the middle of the afternoon and pretend I don't have any commitments. But, I usually end up moaning about my commitments, glorifying the "bad old days", and sucking down a handful of pre-mixed liquor store beverages. I am usually home by 9pm. And, those plans revolve around the plans of everyone else in my home. Those times are cherished. I usually show an uncomfortable amount of gratitude toward the hostess.


A couple of Tuesdays ago, the schedule said, "11p-7a". I anticipated it over a week before. I knew it was there almost a month before. There was a certain degree of dread involved. I started the routine. I left my silent home. I put Will Oldham's track "I am Goodbye" in the player. I got my coffee. I made note of the change in traffic flows throughout the day as opposed to the night. I got on the Bayfront Highway. There was a slight breeze coming off the Bay intensified by the air whipping through the windows at 40mph. I repeated the song.


You are hello
A glowing cry
heaven we go
Never say die
I'll likely never know
the answer why
You are Hello
I am goodbye...

It was like every other night. Every other day. I take that road daily. However that night, there was a Jeep overturned on its side in the middle of the street. I slammed on my breaks, I hit the hazards, and flew out the driver side door. The air had become still. Events were moving faster then time. Maybe time stopped. I took it all in like staring at a panoramic postcard. To my left, the Jeep. Beside the Jeep a young man and a woman crouched over him. And, to my right, a young man face down on the asphalt-- shining glass tossed around his head like cupcake sprinkles. There were no paramedics, no cops. Just me and three other individuals who happened to drive up on the scene seconds after the accident. Behind me a couple stood together as the man called 911. 


I walked over to the woman and the conscious man. "Don't move him. Try not to get him to move," I blurted out. "I am-- but, he is trying to move," she told me. We both knew he was craning to get a look at his friend, to assess the situation. I told the woman she was doing a good job. Then I looked at the Jeep. There was still a young woman inside, who I would later learn was the driver. Intoxicated. Somewhere along the line, I learned never move a body. She seemed okay. I left her. 


I was the only one moving freely through the scene. Beside the woman with the young man, no one else had approached. I walked over to the other young man in the street. He wasn't moving. I could see as I strode over, his eyes were open. I bent over. No blinking, no moving glances, no changing pupils. Not good. I leaned over him, being sure not to touch anything, looking side ways across his chest. No respiration. Nothing. I knew he was dead. I knew he was dead as I walked toward him. People just don't lay like that. Like a discarded toy thrown aside. I whispered something to him, I can't even remember what. Maybe,  "It's okay... just rest." Strangely I wanted to stroke him like you would a sick child. But, I also knew he was gone. Not "in" there. Empty. 


I stood back up. I quickly made my way over to the couple with the phone. "Please let me use that," I requested. I called the hospital. Why wait for the paramedics and cops to get it together, when I could wave to my co-workers in the break room on the second floor less than a block away? I turned away from the accident. I walked up into some trees, because I didn't want anyone to hear me. A smaller crowd had collected. One woman was wailing, she knew the victims.


A: ICU East.
M: Hey, it's Melissa. I am on my way in for work. But, there has been an accident down here on State and Bayfront. A car is overturned. There are two hurt... and one is already gone.
A: What? 
M: I am right down here on the Bayfront. Look out the window. Nobody's here yet. I am going to be late. (Right here shows a bit of my shock over it. Like I would really be able to work after witnessing this!?)
A: Oh my god. But, what do you mean you're on your way in? You're not scheduled.
M: I am on my way in to work 3rd. Please check the schedule now. 
A:(pause)No. No, you're not scheduled. Go home.
M: Man, okay... I gotta go.


There it is. That tiny little part of this that makes no sense. Sounds selfish, huh? But, why was I there? There was NO reason. I accidentally wrote it wrong on the calendar almost a month ago. It's like I got in my car, witnessed one of the most terrible things I have ever seen in my life, and then went home. 


I understand death. I know it happens. It happens every day at my job. I see violent deaths and labored passings. Yet it is clinical and clean. Somehow expected. Death itself never bothered me. It has to happen. If anything, the sorrow and grief of the survivors is curious and heartbreaking. This was different. When I stood so close over that man, there was a force involved like I have never recognized. Something so massive. Something that made me feel so small.


I waited for the paramedics and the cops. I explained to the officer what I could. What I saw, which I felt was little. Out of the corner of my eye, I saw the paramedic check  the ragdoll  for a pulse with his blue gloved hand. "We have one casualty," he reported into the radio strapped to his vest. Someone screamed as he walked away from the body. I finished with the police. He was going to clear a path for me to go home. I asked the couple with the cell phone if they were okay. They shrugged. 


I got back in my car. Time had started to speed up again. Back to the rest of the world. I flipped my hazards off. I drove slowly, trying to avoid the shoes in the street. I headed back West. I started to sob. I clenched the steering wheel so hard, I ended up with blood blisters along the bottom row of my knuckles.


I am goodbye
like the end of something wonderful sometimes
like the way that a wound-up toy unwinds
I am goodbye
I am goodbye...


When I got home, still sobbing, my husband was sitting out in the garage. In a blur, I tried to explain what had happened while still gasping and nauseous. And, that I didn't have to work. I made a drink. And, another. I smoked cigarettes-- I don't really smoke. It was almost like I wanted to feel tactile things. Like smoke filling in my lungs. Like alcohol changing my lucidity. I talked to my husband. I cried on and off. He eventually went to bed. I called one of my best friends in California (by now it was past 1am EST). I told her what happened. I told her I loved her. She was thankful I hadn't arrived at the scene moments earlier-- that I wasn't involved in the accident itself.  I didn't even think of that.


Finally, I went to bed. Only after writing a few notes to a couple other people, expressing my gratitude for them. I slept. I had the next day off. So, I was able to attend to my children and my home without too much thought of it. However, in a strange way, my mind kept forcing the image of the dead man back into view. I wasn't sure how to feel. I am still not sure how one is SUPPOSED to feel when something like that happens. I know it is carried deep within you. One of my favorite authors, William Marsh, suffered from hysterical blindness after his time in the war. I have lost six pounds since that accident. I have no appetite. But, that could just be heat and summer.


It all happened on a Tuesday night. Wednesday, I had off. I had to head back to work on Thursday. I mindlessly got in the car. I mindlessly pulled out onto my usual route with the same CD in the player. It wasn't until I was about 50ft from the scene that I had realized what I had done.  I started to cry. How stupid of me! I cried all the rest of the five minutes into work. I pulled it together to make it through the lobby, up the stairs, but once in my unit I started to tear up a bit. But, I kept pushing through it. Only a couple of people in a unit of over 75 people knew what had happened or bothered to extend themselves to me. I don't ask for sympathy. I definitely don't court hugs and pats on the shoulder. But, is this how much we don't want to be bothered by each other's trials? Does it stop and make us think for too long? 


More than a couple people close to me, friends and family, want to believe or want me to believe it happened for a reason. I am not sure about that. What blows my mind more than anything is perhaps it happened for NO reason. We, as humans, rationalize too much. I believe in the forces of entropy. And, the deterioration into chaos has never been so palpable.  


I do wonder how those tragic minutes played out into the loss suffered by his family and  friends. I wish them strength. I will never be able to listen to that song again, a favorite of mine, without thinking of the man I never officially met.


I am goodbye
like the end of something wonderful sometimes
like the absence that more and more crowds into my mind
I am goodbye
I am goodbye




Friday, July 20, 2012

As for me, all I know is that I know nothing, -Socrates

When I left him, I reasoned thus with myself: I am wiser than this man, for neither of us appears to know anything great and good; but he fancies he knows something, although he knows nothing; whereas I, as I do not know anything, so I do not fancy I do. In this trifling particular, then, I appear to be wiser than he, because I do not fancy I know what I do not know.  --Socrates


This past Thursday afternoon I was invited to address two groups of young people (ages approximately 17- 22yrs) on the spectrum preparing to head off to college.  From Pennsylvania, California, Michigan, Nevada, North Carolina, and Massachusetts even!  The invitation came from Janet, a psychologist I have been working closely with for a while now. As one of the instructors working with this group, she shared some challenges she was experiencing. And, one of her solutions seemed to be me. Hearing it from the horse's mouth approach. I can appreciate that. I wouldn't necessarily trust a rocket scientist to teach me how to make shoes, no  matter how bright or how many pairs of shoes he/she owned. I would want the low-down from a cobbler who had the callouses on his hands. But, here's the problem-- I can only tell you about me. I can tell you about what I have read also, but you can get your own library card. So, we come back to what do I know? I know me. And, I have had over forty years of knowing me. I guess you can say I have gained my chops in the realm of a recently diagnosed female on the spectrum.


I had trouble imagining what a 17year old would be thinking if they were forced to sit directly across from me for an hour plus. Not really able to do that, I imagined myself at that age. I remembered what I did and what I wanted to do. Would I have been engaged? Defensive? Pensive? Bored? I probably would have preferred to be sitting in the middle of the woods, buried in leaves. Well, I don't even have any idea what people in my own peer group think of me and my tales. So, what would this group glean from the talk? Got me! But, I dove in the water. With less than a day to prepare myself, I couldn't even test the temperature of said water.


I did write a few notes to myself based on Janet's brief overview. I referred to those notes ZERO times. I can't even recall how I began. A young man in the second group had an excellent question prepared for me out the gate. To paraphrase the first part of his question, what was it like being undiagnosed for decades? Well, I guess that is as good of a start as any. It sucked. It was frustrating. For years, I had the grades. The stellar grades. The slot in the "gifted" program. Yet, I also had the years of behavioral and what was read as discipline issues starting as early as kindergarten. By the time I reached high school, I had given up. I didn't understand it. The people around me didn't understand it. So, I just stopped. I managed to graduate in the top quarter of my class, but I never took homework home. Not unless it was a subject I enjoyed. Teachers couldn't understand why I wouldn't show my work in college algebra (with correct answers), but I would request extra physics books to borrow. They couldn't understand what would possess me to just stand up and leave a noisy classroom or cafeteria, to just walk straight out of school to sit in the side yard. That was a behavior issue to them. Not a sensitivity issue. Something I like to share with every group I have ever addressed, the wisdom bestowed upon me by a guidance counselor who offered no guidance, "I'll read about you some day... for either winning the Nobel Peace Prize or ending up in jail." To me that phrase IS undiagnosed ASD. My epitaph, perhaps. However, I am sure to relay-- I do not use those years as an excuse or hold a grudge. What matters is now.


This group was spending a week preparing for the transition into college life. Having attended at least three colleges in over fifteen years (not including other training and online courses), I knew a little about university life. I had earned nearly enough credits to be awarded a Doctorate, but needed to scratch enough together by trying to put the correct pegs in the matching holes to be award a degree of Letters, Arts, and Sciences with a dual focus of psychology and creative writing. Just trying to get a piece of paper in my fist before I quit AGAIN. I knew how difficult it could be. 


College is a series of hoops. Okay, first, life is a series of hoops. However, in college, I think there are more hoops lined up one after another and closer together than one will ever experience at any other point of their life.


Let me back up. Leaving for college for the first time is an amazing experience. For many, it is a chance to break free from the parental structures both physical and metaphysical. It is a chance to finally assert one's self. If you are lucky, you know what you'd like to pursue in the academic culture. You can finally wear old men's oxfords all the time without someone telling you you look like a rag-a-muffin. You can begin to feel empowered by choosing to surrounding yourself with people like yourself-- people who have perhaps read Pere Ubu. You have resources at your fingers: oil paints, microscopes, and a professor or two who are still engaged and engaging. It is great.


As you begin to examine the requirements of your degree with your adviser, the hoops begin to cast their shadows on your bright and budding academic career. I spent most of my life questioning the hoops and having contempt for the people who managed to glide through them. Heck, even the people who went kicking and screaming! Instead of  taking a few steps back to then gaining momentum towards that great leap needed to pitch myself through the center, I stood back and tapped my chin. Hmmm, what is this hoop composed of? Who placed this hoop here? What is on the other side of the hoop? The diameter? Is there a way around the hoop? Tick-tock-tock-tick. If no one was able to address these questions in what I viewed an acceptable manner, I'd turn my back on the hoop. Usually only to be faced with another hoop. The process would begin again.


Don't misunderstand me! The over-analytical mind is a precious and rare commodity. It is the fertile ground of  every unconventional idea that eventually becomes conventional until another ripe mind questions its validity. As one young man quoting Socrates reiterated during this phase of my rhetoric, "The life which is unexamined is not worth living." Yes-yes, I couldn't agree more. But, do I agree because it is a CHOICE  or because it is simply who I am? Is there the same degree virtue in a good deed that is done without thought versus the good deed that is done after contemplation? Or are they both equal because the result is equal? Follow? I have no choice but to CONSTANTLY question life. It is how my brain functions-- constantly question. 


It is like this-- you are dog tired. You are aching. You finally, after hours, find a chair where you are able to rest. You sit. You sigh. You relax. You are relieved having found a chair. You appreciate the chair being there for you to take respite. At that point, you stop thinking about the chair. Here's where the subtle difference takes place. Maybe before I even let my haggard bones collapse, I begin to assess. Is it wooden? Upholstered? If yes, what fabric was used? Was it ever RE- upholstered? Why? Cats? Sitting near a window and sun-bleached? Is the seat still warm? If yes, does that means someone or something was recently sitting there-- will they be back? Meanwhile, I am still aching and still unseated. That is a BIT of an exaggeration but not much.


Again, if the inquiries about the hoop cannot satisfactorily be answered and reason for the hoop doesn't materialize, that's is usually it for me. Even if the third hoop following down the line provides a prize much revered.  Hoop one is senseless. I cannot make myself do it. My first collegiate hoop? Gym class. I was one semester away from being awarded a bachelors degree with two minors. Gym? Gym! As mentioned in previous blogs, I never liked Phys Ed much. I even shared with the group about my nearly six foot self being seen as defiant because I would not, as a senior in high school, try to bend myself in to an origami crane. I quit college rather than jump through that hoop. 


I can't say the decision was the worst ever made. I ended up moving to Chicago- working in record stores, publishing freelance comics and illustrations while meeting some fantastically talented people with whom I am still friends today. Wait... maybe that is not the best way to end that. I guess  you need to jump ahead fifteen to twenty years and be faced with a potential employer who doesn't care if you know the differences between all the Blue Note album labels. Or that you can tell him what city Harvey Pekar called home. The potential employer needs to know how fast, how high, and how far you can jump through a hoop that you may or may not agree with in order to complete a project for the overall benefit of the team/employer.  Practically speaking, it is part of how you will pay your bills. Also, there may come a day when you question yourself as to why it has taken you nearly twenty years to complete something it takes most typical people four years to accomplish. 


Being able to jump through a hoop sometimes has very little with overall aptitude, intellect, or logic. Some less then bright people are pretty good at hoop jumping. They potentially can get further in their pursuit than you, even though you may know and understand more than they do. It is a skill. Try to learn it. It will only enable you to achieve more.


However, there is a difference between being a trained pony and a hoop jumper. People should respect you, and you need to respect yourself. It is a fine line. Recognize where your line lies in the sand. Every once in a while evaluate what is on the other side of that line. And, if necessary, adjust your line. Don't worry, lines aren't permanent-- they are fluid.


One of my favorite gentleman came up during our mostly one-sided conversation, Sherlock Holmes. As I mentioned, even back in high school, I had a hard time finding the value in information which held no interest or purpose for me. And, being unable to anticipate future need for most of it, many of those topics became mute. In the episode of the Cunningham Heritage with Ronald Howard (1954), Watson and Holmes decide to share a flat. While unpacking, the they begin to discuss how unbelievable it is that a man of Holmes' intellect didn't know the Earth moved around the Sun. Sherlock goes on to explain to Watson it means nothing to him so he will promptly forget it to leave room for facts which are useful to him. Exactly! Whether it is a person, place, or thing... living or dead, if it doesn't apply to my world or interests and pursuits, I have trouble finding a reason to retain it or even initially pursue it. If I don't like an artist, why would I remember his/her name? One of my favorite artists is Jean Dubuffet. If I don't own your dog, why would I remember its name? My cat's name is Itty. If I like British bikes better than American bikes, why would I remember what kind of braking system a Harley Davidson uses? A Norton Commando uses drum brakes. Even though I can remember what all the Twilight series book covers look like from working in a bookstore, I don't know the author's name anymore. My favorite author is Harry Crews.


In the realm of academia, these hoops are called requirements. They are the filler a university pads their degrees with to show the world their graduates are well-rounded individuals. My advice? Pick the best you can, complete it to your best ability. Give the subject designated time and effort. Complete it, move on. Once it is done, you can keep it in the storage units of your gray matter or put it to the curb with a "free" sign leaning on it. Keep yourself open to possibly experiencing something interesting. Something you may want to follow-up on in the future.


As a side note, when thinking about all this thinking, I think, "There are sometimes I just wish I could turn my brain off." That is complex subject for another time. It opens cans of worms. When does a line of thinking become obsessive? Before I even heard of ASD or Asperger's, I planned on one of my research topics toward my psychology major to focus on  understanding the borderline obsessive thinking found in MANY of my fellow "gifted" students. And, was it helpful or harmful to tell kids like that to brainstorm and hyper-focus even more? At one point of my life I wore a rubber band around my left wrist. I would snap it when I wanted to STOP thinking about something. There was also one point of my life when I would get annihilated to slow all the spinning gears down. Some of that changes with self-actualization. Some doesn't. But, it is all a topic for another time. 

Here's a link to this great program:
http://www.mercyhurst.edu/learning-differences/foundations-program/

Thursday, July 5, 2012

I am finally converting some analog to digital. This is T.Nougat, one of the most favorite bands I've been in. A trio with guests. We toured a bit. We did live radio. Singles on comps. We opened. We headlined. We did mostly originals with a few covers like Can, The Stooges, Gang of Four, and Elton John. I was fortunate enough to play with two of my best friends. We all lived in the same flat and practiced in the basement. I think it shows.This is the first track I converted. A studio recording. One of the few songs I brought to the table. I had a weird relationship with lyrics. I still love this song. It is so much more heavy than we ever intended. Thankfully.

T. Nougat- I Love You (1996)

Wednesday, June 27, 2012

Coming up for air

The last post was a bit heavy. And, from what I am to understand hard to follow. Heavy and hard to follow, in short, defines my thought process.  What makes perfect linear sense to me, often looks like a sticky spider web by the time it makes its way out of my mouth or off my fingertips. Briefly, I embrace science and research. I believe it is in our human nature to continually question and seek new information. When we stop is when we are being inhumane. The last post was more questions I pose to myself-- using a finger to pick my own brain not to point at any one person or faction. I have a Liberal Arts degree with a minor in creative writing and psychology... and almost another in philosophy. I've been briefly entrenched in other degree of business advertising. Invoke, provoke, revoke, choke. And, am trying to begin a journey to another degree in neuropsychology. I chase answers. I very rarely give answers, but I always ask questions.

Here are some pictures of my garden. My garden makes me happy. Things that exist without talking make me happy. Enjoy!







I have some others who wish they were here-- honeysuckle, lupine, mountain laurel, lilacs, bleeding hearts, hollyhocks, clematis, rose of sharon, hosta, roses, etc. And, most of all, my beloved Bela Lugosi lily! Maybe more next time.







Buckle your seatbelts! It's ETHICS!

Last night at work, we admitted a gunshot wound to the head. As I went out to the waiting room to retrieve his parents and his sister, I wondered if he thought of their suffering. I wondered if they thought of his suffering that lead him to his final actions. There is nothing you can say when you experience people's sorrow on that level. These are the moments I no longer share with my husband. It is too much for him, and maybe too much for me. In some ways, it amazes me how I can stare at a human being bleeding uncontrollably,  being intubated, or declining neurologically without flinching once. I can feel the lump in my throat form while watching a mother weep over her son who is being kept alive simple to harvest his organs (to help another person in great need). A stony face comes in handy, but it doesn't mean you are not aching inside or on a good day filled with divine joy.

Back to last night. When I am thinking of a few  concepts, at the same time, sometimes they blend together. Like when I am thinking about our gunshot victim and genetic testing for autism or other "abnormal" genetic markers. I am curious about my own DNA. But, it is the same level of curiosity  I would express towards taking apart a clock to see the functioning of the gears. We are complex machines. I am not a Burroughs fan (though Beats are great), I do like Robert Wyatt-- so let's say we are are complex, soft machines. I want to know what my gray matter looks like. I want to see a map of my thought process. Of your thought process. Of the thought process of a frog. HOWEVER, I do not want to change any of it. Before we can decide how to "help" someone live a fulfilling life, we need to define a fulfilling life.

All humans suffer. And, the degree of that suffering is relative. If the worse thing you have ever experienced is a hang nail. It is your worse experience. If someone else's worse experience was the new onset of MS, that would be their worse suffering. Yet neither person will understand how those situations effect the other, how debilitating or how motivating.

When I attended the IMFAR conference, I was conflicted about a handful of things. Research for knowledge sake is a beautiful thing. Understanding and growth accompany each other. But, I am not naive. I worked at a pharmacy for four years. Snake oil salesmen still exist. I wondered how long it would take for oxytocin nasal spray to hit the masses at close to $100 (if we're lucky) a pop. And, I also realized there were  people in those rooms looking to identify autism genes with the hopes of obliterating them. I am not one of those people. Sure, I want to know the names of those genes. I want to see them. But, "mutations" has a negative connotation even if we are sitting in a room full of scientists. I realize mutations got us out of the water, but I consider myself a far cry from the Toxic Avenger. Okay, semantics is another entry completely. You get it-- I am not a mutant. If someone had identified my mutant genes and altered them, I would not be me. I like me. I've had some rough times, but not without purpose. I should mention that purpose may not always be event to me. It doesn't have to be. The human experience is composed of many taut strings called people and their lives. We fit together to form a plane with the tension of a tennis racket. Time is the ball. If one string is not taut or is removed-- the ball doesn't bounce to its full potential.

Here's where I try to exercise the theory of mind so often discussed. Some parents have children who are placed on the most severe end of the autism spectrum. They see what they perceive as their child's suffering daily. They themselves suffer. They want to help their child. They want to help themselves. It is all so slippery. Why is it okay to use behavior modification on my daughters who are labeled higher functioning but not okay to alter the genetic code of  a non-verbal, self-harming individual? I don't have an answer for that. But, I should disclose I worked with a group called L'Arche even before my diagnosis. A different and what some call disabled life is NOT LESS of a life. I believe neuro-typical and physio-typical people just don't know how to integrate non-similarities into their life.

Then again, wading through the experience of life and death on a daily basis, I wonder how much is too much. How much has our technological ego enabled us to enable suffering. Quality versus quantity argument. The sick wolf leaving the pack to die argument. But, that sick wolf lived a life before its decline. It contributed, for better or for worse, to the character and livelihood of the  pack. It made the pack what it is. How could we be so bold as to try to skip steps in our own chronology? How could we feel so confident to wrench the pen out of the hand writing our collective history? Sure, some people say it is time to write that history with a typewriter. Better yet, some of us are crazy enough to think we can write it on a Brother word processor!

So, again, back to last night. If someone told that man's parents when he was just an embryo in his mother's uterus they could detect his future mental health, would they take the test? If they were told it would prevent their child years of suffering through mental health issues and horrible self-inflicted death, would they? If the test was taken and they were told modification or a terminated pregnancy could take away the suffering of watching their child die in such a way, would they? What if that child would touch countless others with his humor, relative good nature, or kindness in spite his depression? What if he created masterpieces of art that would only be discovered after his untimely death? What if he had notebooks filled with theories that could help humanity? What would they do? Everyone suffers. Everyone has their own joy-- sometimes fleeting. Are we so bold and so brazen to think we can control and, more disturbingly, profit off of each extreme?

Whew... that is just one night's worth electricity jumping around my gray matter. I think I will decompress and do some laundry.

Wednesday, June 13, 2012

Splitting Hairs

These are some of the situations the general public needs to understand about autism. These are situations that the neurotypical public whitewash with a shrug and a "what's the big deal" mentality. These are situations that lead to accusations of spoiled children lacking discipline or simple misbehavior. And, that breaks my heart. I know from personal experience there is a huge gap in understanding. I feel lucky I learned to try to keep my mouth shut, even if I do find it unjust. However, with my daughters, I am trying to implement the best tactics I know-- most come under the blanket adaptive behavioral therapies. However, sometimes, you hold your child by the heel and dip them in head first-- hoping the experience will lead them to be more resilient.

When Sine, Cosine, and I went to last week's IEP, one of the five teachers/faculty present asked me how I tell the girls apart, because they appear identical. I don't understand this-- because they are NOT by any means identical to me. Yet, I have heard this enough to know the majority of the people we've encountered do see them as such. I casually mentioned a possible haircut in the near future. And, Sine's demeanor immediately changed. She stiffened. Her tone of voice changed. This would not be happening she informed us. Cosine then piped up to say she wanted a haircut. I tried to defuse by saying it is a possibility but would NOT be happening any time soon. I considered this like our frequently used five minute warnings for transitions. Some day, not today.

Almost a week later, Cosine approached me about a haircut. These kids do not let go of much. Once it is out there, expect to hear about it again and possibly often. Sine began to panic. Sheer panic. I started the comforting talk and the soothing actions. However, this is when I needed to make a choice. Entertain Sine's rigidity and deny her sister an opportunity she actively wanted to pursue or keep going.

We had faced this type of grand meltdown before when we had to get Sine to break down many of the huge structures, "tents", Sine had built throughout the house. One of my best friends has been employed as a teacher and parental resource, specializing in ASD, for almost two decades. She told me get it now. The longer you let the behavior to continue the harder it will be to break or change. For as mechanical as I can appear, it bothered me to break down my daughters' lives simply into a series of wanted or unwanted behaviors. But, it had to be done. I didn't want to envision my daughter having what others would view as "temper tantrums" at the age of forty. I wanted to give her the tools to move past difficulties, not because it is so important what others think of her-- but so she can be comfortable with herself, understand herself. I want her to feel strong, confident, and if possible, in control.

As I started to prepare a separate room as Cosine's barber shop, Sine began to pull at my arms and drag herself as she sobbed. She wailed, she clung to my legs, and ultimately, she began to scream. I tried to talk her down with explanations-- Cosine would still be the same person. Sine could still play with Cosine, and Cosine would still love her. There would be no condolences. I made Sine sit somewhere she wouldn't have to witness the act. I put a movie on she'd enjoy. I gave her her favorite blanket. And, still the sobbing continued. Part of me wanted to stop, to make her feel better. However, Cosine deserved to assert her individuality if she wanted to.

I could hear Sine sobbing and moving around the next room as I reaffirmed Cosine's decision. She looked beautiful. She would feel so much more comfortable. She was such a big girl and being a good listener by sitting so still. I could tell it was bothering her that Sine didn't support her choice. As I had brushed Cosine off, changed her shirt and gave her a big hug, Sine slowly came back into the room. "See!" I brightly said, "It's all over and everyone is okay!" Cosine want on to confirm, "I'm okay! We can still play." Sine whimpered and continued to chew on her blanket.

Cosine went off to continue her previous activities. I scooped up Sine. This is when the coddling goes into full force. I try to get her emotions balanced and her respiratory rate normalized by softly whispering and gently petting her hair while squeezing her extra tight. The effects were immediate. We started to review what happen. I helped her find words to express what set her off or what issue we needed to address. More sighing replaced the screaming. A nuzzling face to my chest replaced the stiff limbs. We again were faced with this: change will happen whether or not we want it to... and sometimes (most) times it is good.

After Sine had returned to a comfortable frame of mind, I made her rescue all the framed photos of Cosine out of the trash. Yes, while I was cutting Cosine's hair, she had collected all the evidence of Cosine with long hair and destroyed them by throwing them in the trash. That is how overwhelming the situation was for her. A simple hair cut had the potential of erasing an indescribably close bond with her twin sister. To think a teacher, a future employer, or even an uninformed relative would approach her and flatly tell her to "get over it" is beyond cruel in my mind.

By simply taking a little extra time and offering Sine some understanding and support, she was able to move through it not just passed it. Not only was she already able to compliment Cosine on her new hairstyle but she has approached me about trimming a "little" bit off of her own hair. Whew!

Wednesday, June 6, 2012

IMFAR: day one lecture notes transcribed (2/5)

Here is the second and long overdue installment of my transcribed notes from the first day at IMFAR. It has taken me longer than I had hoped to work on these. Sometimes life takes over, they say. Yesterday, I had the kindergarten transition meeting with Sine and Cosine in tow. Myself and five other participants reviewed, discussed, and eventual accepted Sine's new IEP. It was also agreed upon that a watchful eye would be kept on any emerging needs of Cosine (after I provided documentation of her ADOS testing and its accompanying recommendations of further psychological evaluation). I will definitely explore this process more in upcoming blogs.

Also, we have been doing some home improvement. As much as I enjoy the conceptual planning and the physical tasks at hand, it is stressful when I have to gingerly accommodate the improvements against my daily routines. My daily routines provide me with as much comfort as a Valium does to others.

Also, I have cut my hours down at work, finally acknowledging I have been living my life teetering on the brink of collapse. I am hoping for more time to spend with my family and more time to dedicate to more writing & (fun for me) illustrations.

Here's the next piece in the puzzle.

Invited Educational Symposium: Friendship in ASD through Life Span: Nature, Trajectories, Importance and Treatment

Paraphrased overview from program book: Having friends is important to a child's well-being and development of cognitive, linguistic, and social skills in typical development. 60-75% of individuals with ASD experience difficulties in forming friendships. Yet, it is an overlooked topic. Enhancing friendship in ASD will be considered by reviewing individual, familial, and environmental observed, quantitative and qualitative, components.


The Beginning of Friendship- Friendship in Preschoolers with HFASD: New Evidence and Implications.
N. Bauminger-Zviely/ School of Education, Bar-Ilan University, Ramat Gan, Israel

• conceptual different from typical peer interaction


• chosen specific peer over long period of time


• have shared history and shared emotional process


• “closeness” = proximity preference


• develop trust


• friends are stable and durable


• based on caregiver attachment


• markers and forms change


• higher level of engagement in joint tasks


• increase in reciprocal language


• cognitively important


• cyclical: need to have – have to need


• in ASD, 10-44% lacking friendship (number of friends decrease with age)


• sisters = friends (both ASD)


• friends younger or also disabled


• mothers believe teacher mediation important to forming friendships


• teachers believe teacher mediation is NOT important to forming friendships


mutual preference important


• w/ friend: terms of affection in the form of nicknames


• w/ friend: shows imaginative play and touching


• w/o stillness and withdrawal


• didactic interaction lacking


• use of “buddy” encourages


• w/ HAS- shared experiences about fun not fear


• w/ HAS- less complex social pretend play


• both showing encouragement and comforting


• w/ HAS less vocalization


• reciprocity observed in both (quality different)


• w/ HAS solve problems slower, few comments, few coordinated action/gesture


more efficient in 2nd experiences- learn and acquire skills


• friendship feasible and meaningful


• friendship should be specific aim for early intervention


• with no early friends, higher degrees of loneliness, no deeper quality relationships, and anxiety


• developing friendships develop individual