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Friday, July 4, 2014

Not So Undercover Anymore

Not So Undercover Anymore

When I was first diagnosed, I called myself the "Undercover Aspie". Hardly anyone knew and those who did were sworn to secrecy. I was afraid. I was afraid of how people would treat me. I was afraid of how people would react. I was afraid of letting people down. I was afraid of not being good enough. I was afraid of losing my job. I was afraid of everything.

Very soon after my diagnosis, I moved to Texas. It was a difficult task; convincing my parents that I could make the move. I had to show them that I knew what was waiting for me in the real world. I made a budget, showed that I could do my own shopping and take care of myself... but honestly, I had no idea what was waiting for me. 

The real world can be an unforgiving place. 90 days into my dream job, it slipped away. That afternoon, in a fit of anger, I wrote a post on an Aspergers group on facebook. I thought it was a secret group... I was wrong. My mom called me and told me to take it down, but it was too late. I didn't know it at the time, but several people back home had already seen it. 

The amazing thing is that those who saw it started to understand. They realized that I never meant to say the wrong thing or act the wrong way; it was something I couldn't prevent. Several of my friends approached my mom and talked to her about it. I didn't find out for a few months, but when I did, I didn't really know what to think. I was still uncomfortable with people knowing.

But as each day passes, I feel like I am embracing who I am. A large part of me is my Aspergers and it always will be. I can either hide it for the rest of my life and be ashamed of a part of myself or I can proudly wear my Aspergers as a badge of honor. It's not always sunshine and roses, but I need to look at it that way.

A few months ago, I noticed that I began slipping my Aspergers into the rare conversation. Someone would comment about my vast knowledge of technology or something that brought it to my mind and I would make a passing comment. Sometimes the person responded and sometimes it was completely glossed over. The response was always the same: "I never would have guessed". I guess that's how I went undiagnosed for so long. 

It's interesting that I felt more comfortable slipping a comment about Aspergers into a conversation with a stranger versus a friend, but I truthfully didn't care about what the stranger thought of me. I was terrified of being patronized, protected, and looked at differently by those whose opinions I cared about the most. 

Over the past 20 days or so, since I began my blog, I've started to emerge even more from my cover. Before, nothing about my Aspergers was in my name... now my blog is connected to my google plus account. I've begun sharing my blog with at least one new person every day. I have still not shared it as a link on my facebook account, but I have sent links to it via messages to certain friends, old teachers, family members, co-workers, and online friends. I've also shared the link with my psychologist and my counselor from college, with the hopes that my blog will both give them insight into my mind and/or help one of their other patients or clients. 

I don't know that I'll ever shout it from the rooftops, but I know that, at least today, I'm not so undercover anymore.

Wednesday, July 2, 2014

So Blessed

Today's blog post will be short but sweet. I have been very blessed today to have rediscovered my online friends and family. A few simple posts with the link to last night's blog led to an entire day of emotional messages, memories, and an amazing walk down memory lane. I am so overwhelmed by the outpouring of love that I can't think of anything else to say tonight except THANK YOU! Thank you to my old online family and thank you to my new readers. I am finding myself through this blog and hope I am helping others as well. Thank you so much to everyone in my online life for always being there for me!

The Amazing Internet

The Amazing Internet
Helping Me Make Friends Since 2006

Like many Aspies, I've always had difficulties with social interactions. I never knew what to say, how to say it, and always felt awkward. I had some friends, but it was hard work. I was constantly thinking about whether what I was going to say was appropriate and whether anyone would care. My mom tried to help, at least at dance, cutting me off whenever she could, but I couldn't take her everywhere.

In 2006, I found a television show that resonated with me. It was called Kyle XY. Although the plot was science fiction and it centered around a boy who was genetically engineered to be a genius, I felt an odd connection to him. Rewatching the pilot episode during one of the recent storms, I discovered why.

Kyle escaped from the lab where he had been kept in a "test tube" for 16 years. He narrated with no prosody in his voice. He didn't understand the world around him the way that others did. He was very similar to an Aspie. 

They say that Aspergers only leads to socialization issues because of the high sensitivity of people on the Autism spectrum. To mute the hypersensitivity, those on the spectrum escape to their own worlds; worlds where they are isolated from others and don't learn the same things as others their age. Kyle was isolated until he was 16. Like an Aspie, he never learned social skills or communication skills. I know that the writers of the show had no intention of making Kyle an Aspie, but his character made me feel less alone and more than likely did the same for others.

I was so enamored by this show that I took to the internet. ABC Family had a message board for the show and I became a frequent poster. During hiatuses, discussions gradually shifted from the show to life, and I felt comfortable being a part of these conversations.

In 2009, our world as we knew it came crashing down. I know it sounds melodramatic but in this particular forum, it was the truth. ABC Family was canceling our show. The series ended with a cliffhanger and those of us who deemed ourselves superfans were devastated.

Discussions on the forum quickly shifted to ways we could try to "save the tub" (yes, here is where you get to see yet another one of my obsessions: the inability to let go of a television show). We sent emails, letters, sour patch kids, scrapbooks, made movies, and more in our attempt to bring back our show. During that time, we grew closer together and began to refer to ourselves as a family. 

As a last ditch attempt to save the show, and of course as entertainment for ourselves, we did weekly viewing parties of the show, discussing each episode on the forum as we all watched together. I would look forward to those nights for an entire week. That day would drag on for hours. Finally it would be time. I'd race through my dinner so I could be in front of my computer (by this time I was in college) and ready to chat. The hour would zip by and a few stragglers would stay on after the episode ended to chat amongst ourselves, but I always felt that I never had enough of the time that I treasured so much. 

Then ABC Family dealt us another blow: they deleted our forum. I found it tonight using the wayback machine. I felt a warmth wash over me as I read our old conversations. Not all of them were able to be recovered, but those that were put a smile on my face and gave me a feeling that I hadn't felt in years. 

After they deleted our forum, several of us attempted to move over to the Secret Life of the American Teenager forum, but we didn't have much luck. Our family was seemingly destroyed. I created a twitter to find some of my forum friends but it just wasn't the same. I found a few of my friends on facebook, but they are the only two people who ever learned of my true identity. 

Feeling lost, I sought friendship elsewhere. I created five or six facebook accounts under different names, where I played games and found myself nestled in a group called DWA (Divas With Attitude). The funny thing was, one of my friends in that group mentioned that she disliked one of my online personas but loved the others. She said it just went to show how truly diverse a single person can be. 

I was very secretive at first. I didn't tell them that all the different accounts were me. In 2010, around the time that our forum was deleted, I felt that it was time to tell the leader of the group. A full year later I finally told everyone else. I was amazed to find that by opening up to them, they in turn opened up to each other and everyone revealed some amazing stories. 

I also sought out friends in a fandom for Ariana Grande. I had been following her career since 13 The Musical and was a huge fan of hers. I had a very popular twitter account that she followed and had made a lot of friends through it as well. Unfortunately, teenage fandoms are full of people seeking attention. Many teens seem to believe that fake suicide attempts or fake terminal illnesses will get them noticed by their favorite celebrity. I became known as the person to go to if someone was threatening suicide. I was often able to "talk them down". I would tell them how precious life is. That I have several chronic illnesses and that even though I suffered from depression and other mental issues (I was still undiagnosed Aspie at the time) and had made threats of suicide myself in the past, when push came to shove and I was in a hospital bed unsure of what was going on, I turned to my mother and told her how much I wanted to live. 

Unfortunately, being the gullible person I am, I was suckered in by some of these pretenders for days or weeks at a time. I would lose sleep, staying up until all hours of the night talking to them. I finally had enough when a friend asked me to call the police for him because his girlfriend was threatening suicide. I made the call but worried for the rest of the night that I had been set up somehow. I didn't sleep at all that night. I logged off my twitter account for a long time after that incident; but not before posting a video on youtube about the need for people to STOP the lies. 

As far as my family's reaction to my online friends, it's never been good. My parents always thought I was spending too much of my time focusing on relationships with people that I'd never meet and I needed to try to make "real friends". What they didn't understand were that these people were the most genuine friends I'd ever had (not those on twitter, but those on the forums and facebook). I could be 100% honest with them. I never had to worry about what they thought of me, because they would never meet me. The anonymity of the internet allowed me to truly be myself. 

These friends were also always there for me. When my dinner plans didn't work out, my DWA family had a virtual dinner for me. The posts were hysterical. When my best friend (a girl who I call my sister) went to Afghanistan, one of the women I initially met on the forums helped me through both of her deployments via facebook messages. When I was sick or undergoing preps for testing (which were unpleasant at best), they would send jokes to make me laugh. They were (and are) all amazing!

So online friendships really work for me. Maybe they're not the best for everyone, but I love everything they've given me. Even the issues on twitter led me to personal growth. I know my family doesn't understand it and I know that I need "real" people in my life too, but it doesn't have to be all one way or the other. It's a mixture of the two that works best for me... and right now, what works best for me is all that matters.

    


Monday, June 30, 2014

Obsessions: Lists Galore

Obsessions
Lists Galore

It starts out so innocently; last night for instance. I have no intention of doing it. It's as though my hand is being controlled by someone else and I'm helpless to stop it. I compulsively make lists.

Last night at work, our schedule came out, as usual. I decided to write down my schedule on a piece of paper rather than input it directly into my calender on my phone, because management had been cracking down on phone use during our shifts. 

That's where the trouble started... A pad of paper and a pen are all it takes for my obsession to take over. 

(Let me preface the rest of this post by saying that I am trying to lead a healthier life and am becoming more active and eating more nutritious foods)

First, I wrote down my schedule and totaled the hours. 
Then (on a new sheet of paper), I wrote down my nights off and decided what healthy lifestyle activity I could do on each of those days.
*Flip the page* I wrote a list of healthy meals to eat on the days that I did not have the night off.
*Flip the page again* I made a list of all food preparation that I would need to do on my days off (for the days that I work double shifts).
*Flip the page yet again* I made a list of healthy living goals. (This list included stretching for 20-30 minutes daily, swimming 2-3x a week, finding healthy snacking options for stress-eating, and more.)
*(No surprise here) Another new page* I made a list of questions for the psychiatrist (as I am going to see him tomorrow and I've been on the mood stabilizers for about a month and a half now). 
*Proceed to* list of positives and negatives seen since the change in meds.

...And I somehow ended up at a list of ideas for this blog. 

All told, I went home last night with 8 folded up pieces of paper; each one its own list; all of them related somehow in my mind. 

So why do I make lists? I don't fully understand it and I never expect to. What I do know is that lists give me a certain sense of control. I know what I need to do, I've locked myself into doing it by writing it down, and I'll hold myself to completing each list to the best of my abilities. 

I make varying kinds of lists. The lists with little checkboxes are the most enjoyable for me. I love putting a big checkmark next to the things I've accomplished. Obviously, lists like the set I mentioned above are also common. Those lists are my "motivational lists". I also write lists for when I go to see the doctors (both med lists and symptom/question/comment lists), packing lists (I CANNOT go somewhere without my Relay for Life blanket or my Tigger... yes I know I'm an adult, but they're comforts of home and I have slept with my Relay blanket every night since I found out that one of my friends had cancer and have kept sleeping with it even though she's passed.), grocery lists, bill and budgeting lists, and so much more. 

I doubt that any of these lists would matter to anyone but me; I even find it difficult to believe that anyone would find the common thread that led my brain from list to list above, but that's my Aspie brain... As Monk would say, "It's a blessing... and a curse..."

How Dance Influences My Life

How Dance Influences My Life
A paper written when I was a college freshman. 

(I stumbled across this paper tonight and decided that there was no better blog and no better way to word it than the paper I already wrote. The sentiments have not changed a bit. The only thing that has changed is the time gone by since the events mentioned)

            I can hardly remember a time when dance wasn’t a major part of my life, but my mom does. She often speaks of my first month of dance classes. I was two years old and amazingly shy. Each week, my mother would bring me to the studio and each week, I’d stand in the corner, motionless and silent, staring at the walls and refusing to dance. My mother, a dancer herself, often cried after we left the studio. She refused to believe that her daughter wouldn’t love to dance as much as she did. After about a month of paying for lessons that I wasn’t taking, my mother decided to give it one last try. Luckily, that week was the week that I decided to dance.
When I walked into the studio that morning, I got into the circle with all the other students. When asked to define the different French ballet terms, I shouted them loudly and proudly. It was as though I had needed some time to absorb everything that was being thrown at me before I could decide whether or not I liked dancing. From that day on, dance became a part of my daily life.
I’ve often said that “everything I know, I learned at dance” and this is true. Dancing certainly has changed my life. One of the most important things that dance taught me was to have a positive body image. My dance studio was the center of a series of news articles called, “Thin Is Not Always In For Dancers.” At my dance studio, no one was turned away because of size, fitness level, lack of natural talent, or because of a learning disability. My dance teacher takes the time to help every student. She teaches a weekly class for the mentally challenged, she teaches a class for adults, she’s had deaf students and students with down syndrome. From a very early age, I’ve wanted to have the same effect on people as she does. I learned early on that everyone should be treated equally and that no one should be denied help or education for any reason.
One of my best friends has been very overweight and pre-diabetic since she was born. I met her at dance class. When we were little, she really enjoyed dancing. Unfortunately, she didn’t love to practice and she hated how she looked in costumes. After seven or eight years of dancing, she quit. I never thought that it was fair for her to have to quit something she liked because of her size. Recently, she decided to come back to dance. She’s so much happier now and for the first time in her life, I can see an air of confidence surrounding her. Even when she had chosen to quit, no one gave up on her and she was welcomed back to the studio with open arms as soon as she decided to come back.
Dance also taught me discipline. When I was a little girl, it was up to my mother to make sure that I practiced daily. She would call me into the family room, put the tape into the stereo, and make me practice my dances and steps until I got them right. As I got older, my mother slowly started to leave practicing to me. I quickly learned that if I didn’t practice, I didn’t dance as well. I also realized that if I made a mistake, it effected the entire class, not just me. Taking responsibility, I began to set aside time every day to practice. I learned time management skills, diligence, and how to work with others.
For me, being in a dance class was like being on a sports team. For the first time in my life, I was socializing and learning how to make friends. Many of my best friends and I met through dance. I was always the youngest one in my class. I had to learn to act more mature than my age, and how to socialize with the other kids. I needed to learn not to monopolize conversations and I needed to learn to control what I said. As I moved from level to level, I often left my friends behind and had to make new ones, while remaining friendly with my old class. There were so many challenges that I had to overcome, but with each challenge came a skill that has helped me in my everyday life.
When I was little, my favorite thing to tell my dance teacher was that I couldn’t do something. It was no coincidence that she loathed the idea of not being able to do something. As a way to boost my self-confidence, she came up with a new rule. Each time I said, “I can’t” or any variation of that statement, I owed her a quarter. At first, those quarters built up quickly. After awhile, I stopped saying that I couldn’t, so that I could keep my money. Eventually, I began to believe that “I could.” When she had made her point, she gave me back all the quarters and I was able to see how much my confidence level had changed.
Perhaps most importantly, dancing is a way for me to release my emotions and to have a good time. When I’m having a bad day, I dance better than I usually do. I throw myself into my dancing and a burst of serotonin rushes to my brain. I’ve always used dance as a way of controlling my depression and hyper-anxiety disorder. As a young girl, I always asked my mom if I could take cheerleading, gymnastics, horseback riding, swimming, and many other lessons. Each time, she told me that I could, but I’d have to quit dancing. I never took her up on this offer.
Recently, dancing has been difficult for me. I’ve always had to struggle against a birth defect in my left knee. Since I was seven or eight years old, I’ve danced with a knee brace and have had to “alter” steps to favor my bad leg. All I ever wanted to do was dance en pointe. My mother had always said that my leg wasn’t strong enough. Finally, I found a physical therapist who had been a prima ballerina in a New Jersey dance company. She treated me for several years, until she felt I was ready to go en pointe. The next weekend, I went shoe shopping. I never felt the pain in my toes, feet, or legs; I was too excited to notice it.
Another recent obstacle for me has been my increasing health problems. Beginning in the tenth grade, I began to have trouble doing simple things, like walking around and getting out of a chair. Obviously, this meant that I couldn’t dance. I fell into a deep depression, believing that I had lost the one thing that made me whole. In the beginning, I was going to dance class and watching from the corner. This quickly got to be too much for me, and I requested to stay home. If I had any doubts as to how important dancing was to me, they were quickly squashed.
I began dancing again, slowly, trying to move through the pain. I knew I wasn’t back to the dancer I had been, but I still felt wonderful being able to do it again. I’ve danced with tears brimming in my eyes, but I refuse to give up something that I love. The toughest thing I ever had to do was take a break from dancing. When I was sick, I’d throw the music on and, while lying in bed, I’d move my feet and practice my dances, hoping to do them again in class soon. When I had MRI’s and CAT scans, I’d keep my headphones in, playing my dance music, and would take two of my fingers and, holding the rest of my body very still, would turn them into legs and would practice my dances. One of my nurses once told me that I was the first patient she had that slept with perfect turnout.
My mom and my dance teacher are best friends. Through my mom, my dance teacher has become a second mother to me. She teaches me more about life than all my school teachers ever did. She loves all of her students, yells at us because she cares, and hugs us when we’re sad. She was there for me when my Great Grandmother died, and she was there a year later when my Grandmother died. I know she’ll be there for me as long as I live. She has influenced my life because I want to be just like her. I want to make a difference in the world. I want to make an impact on everyone I meet. Like her, I want to change the world, one person at a time.

Saturday, June 28, 2014

Yes Different From The Rest Of Us Is Belle


YES DIFFERENT FROM THE REST OF US IS BELLE

Growing up in a family of disney lovers,  you get used to disney dominating the conversation.  Its no surprise that I have seen every disney movie or that i have all my favoritesmemorized.

Favorite princess: Cinderella

Favorite Dwarf: A tie between Dopey and Doc

Favorite Villian: A tie between The Witch in snow white and Scar

Favorite fairy: Tinkerbell

Favorite Original Character (member of the gang): Daisy Duck


...and so on and so forth.
My answer to favorite princess has always been an interesting one, because i have always loved belle and identify most with her.. The thing is, I never saw her as a princess. I know I know... at the end of the movie she becomes a princess, but to me, shes my disney reflection.

Look, there she goes
The girl is strange, no question
Dazed and distracted, can't you tell?
 Never part of any crowd
 Cause her head's up on some cloud
No denying she's a funny girl, that Belle
----------------------------------------------------------------
Look, there she goes, that girl is so peculiar
I wonder if she's feeling well
With a dreamy, far-off look
And her nose stuck in a book
What a puzzle to the rest of us is Belle
---------------------------------------------------------------
But behind that fair facade
I'm afraid she's rather odd
Very different from the rest of us
She's nothing like the rest of us
Yes, different from the rest of us is Belle

After receiving my diagnosis of aspergers, i began to realize something peculiar. The two fictional characters I was most like (Belle and Matilda) both show trademark signs of aspergers (more on Matilda later as this blog entry is all about Disney).

Belle is my Disney reflection because i understand her completely; something i cant even say about myself. Belle never asked to be seen as odd. She never desired to be an outcast. She didnt wake up one morning and decide it would be fun to be a nonconformist. Belle was just herself; a loving daughter who thirsted for knowledge, loved a good book, and couldnt seem to make friends (even though she deserved them more than most).

Now Im not saying that I feel I deserve friends more than anyone else... although i would do anything for anyone (friend or foe) and thats a rare quality to find in anyone today. What i am saying is that i spent my life with my nose stuck in a book. Ive been caught reading on the streets of nyc, at a nightclub, while walking, and my mother had to take my book out of my purse before prom.

In a way, my books were my friends. They were always there and never busy. They never changed. They could transport me to parts unknown and allow me a brief refuge from the life that made me so unhappy.

Belle was also seen as strange by others and therefore had difficulties making friends. I could say the same about myself. As I previously mentioned, my imagination used to get me into trouble and it led to many of my classmates remembering me as the liar who came to school one day and said I was my own robot twin sister. Others thought i was weird because i liked school. I made the mistake several different times of reminding the teacher that they had forgotten to assign homework. That certainly didnt earn me any friends. Neither did being honest with substitutes or being the teachers student reminderto give out a test/grade/assignment at a certain time.

I dont know if i believe belle had aspergers because of my diagnosis. I know aspergers was not really known about when the belle character emerged... but i dont believe in coincidences this big.

Rules

Rules

Ever since I was little, I've had a somewhat unhealthy obsession with following the rules. In kindergarten, I was given the all important task of being the last kid in line and shutting the lights and the door when we left the classroom. A boy in my class (whom I began to see as my mortal enemy) decided that he was going to be last in line and refused to leave the classroom. Knowing that my teacher had entrusted me with this seemingly prestigious honor and expected me to carry out her wishes, I steadfastly refused to leave the classroom as well, repeatedly telling him that I was to be the last one out of the room. We both ended up in the principal's office over it. That was the one and only time I ever got in trouble at school.

Growing up, I continued to be the ever obedient, rule-following automaton. When my dance teacher told us to practice our splits every day, twice a day (when we brushed our teeth) I obeyed without a second thought. If I missed a time, I would actually feel guilty about it. When my grandparents and parents decided that Rugrats was a bad influence and my brother and I were not to watch it, I made certain that if it came on and I was in the room, it was turned off. I came home from school every day and did every bit of my homework before doing anything else. I never tiptoed over the line between good and bad behavior. I've always been a terrible liar. The one time my "friends" convinced me to sneak out, I refused. They made up some stupid lie about how I wanted to go see my boyfriend at the mall (so their parents dropped me off there and dropped everyone else at the movie theatre... then they all walked to the mall to meet me)... meanwhile, my mom and dad had met me at the mall and I had already told them everything. They said they'd stay. Later that night, when boys arrived and my "friends" started behaving poorly, I immediately called my mom and dad to come get me. 
...In college, I never went to a party or even had a drink. 

So why all this thinking about rules? Tonight at work, something so small set me off, but knowing my history with rules, it makes so much sense. At about 7:10, they told us that there was a suggestive selling competition that would end at 8pm. At 7:58, I sold the item that would have led to a victory, but 8pm came and no one said anything to me. At 8:03pm, one of the other girls sold that same item and was given the win and the prize. 

I didn't care so much about the prize; I was upset because I felt like they didn't like the winner, so they waited for someone else to win. If a contest ends at 8, it ends at 8. It doesn't end at 7:59 and it doesn't end at 8:01. I felt like it was rigged against me and the whole thing was unfair. Even the customer who purchased the item was upset at the outcome. Additionally, I'm very apprehensive about all relationships I think I have, as I was misinterpreting relationships at my other job. My co-workers got upset, thinking I was just sore about not winning, but I would have been fine losing if it was within the rules of the contest. I just don't understand how an 8:03 sale qualifies as a winner in a contest that ENDED three minutes earlier!