Random

     As my mother drives the car, heading away from Kohl's today, all I could do was let was grab a hold of my hair and let out a big, "Ugh". This was silently followed by a "Why am I fixating on EVERYTHING?". "Why am I overanalyzing the fact that I am fixating on things, thus fixating on fixating. It's a never ending circle that won't let me go. 

     This particular scenario started with my mother making the comment, "I don't need to be looking at gloves after the gloves we got me at Kmart!". "MOM!", I shouted as we walked through Target. The stares centered in on us and we got a couple curious looks. I can only imagine what others were thinking. I've been hiding a pair of gloves in the trunk of my mothers car for her for Christmas?" She had no idea what I was talking about. Of course, I had to begin to explain that I had gotten the gloves for her and that she hadn't gotten them. I thought she had seen the pair I bought, but as far as she knows, she bought them with me. I have no idea what she was talking about, but I ruined a Christmas surprise! She was upset that I did so and I kept saying that she had mentioned it to me. "Quit trying to blame someone", she said. "It's either I blame you or keep thinking that I'm an idiot who made a stupid decision". Well, she chuckled at that, good. That's when the hands went up and the UGH came out. "I feel so stupid", "Why did I say something", "What am I going to get her for Christmas". "I ruined Christmas". The thoughts just swarmed in my head until I couldn't take it anymore. This was one of many scenarios that I have fixated on over the past couple of weeks/months. I need to STOP! 

     Sometimes its really hard to fixate on things. I love that I can fixate on things and have an obsessive joy about things, but that obsessive joy is sometimes not reached. Its like, you get a bite of chocolate that is so heavenly that you take a second bite to satisfy your want. Unfortunately that bite doesn't do it. so you take another bit, and another, and another after that. Sometimes fixations and obsessive joys are like chocolate you can't get enough of. You repeat what you are excited about, you can't get over that excitement, so you keep acting on the excitement and repeat  your self over and over again, but you just can't be satisfied and it's FRUSTRATING!!!! Then there are the negative thoughts that you obsess over. Those are difficult too because instead of acting on them, you try to cope with them and when you can't cope with them, they build up, you continue to fixate on them, and you have a meltdown. I just want to stop these fixations NOW! 

A couple fixations that I have had over the past couple of weeks just for the full affect

What are we doing for Christmas? I wonder if E can come over for Christmas and decorate cookies with us. Mom can E come down over Christmas and spend time with us. Can you make sure she comes down to decorate cookies with us. I know Emma will be here, but how cool would it be if the three of us did stuff together? Can you message E? Have you messaged E? Has she replied yet? What did she say? Did you ask her specifically about the 23rd to decorate cookies? Okay, I wish E could come over to do cookies. 

Am I working on Wednesday? I can't work until close because we are having company come over? Do you know if you need me Wednesday or not? Do you know if I get ice cream or not? Mom always likes getting the special ice cream. Mom tells me I'm not supposed to tell you that. So am I working on Wednesday? V: "no you are not. Me: Okay that means no ice cream for mom then, family is more important than ice cream. 

I know she is a new SS. I know she isn't meaning to be bossy. She taking advantage of being an SS. I need to chill, this isn't a big deal. Take a deep breath J. But she is watching me like a hawk. I should got talk to my supervisor. I'm not upset, this is little I have this. She can't keep telling me to scoop ice cream, I need to talk to my supervisor. Talk to supervisor. I'm on cash register now instead of scooping. 

I miss M. It's been one year since I saw M. Let me write matt a message. Oh let's change our profile picture to M. I wonder if M will notice. I wonder if M is coming to Pa for the holidays. He does have family here. Wait, will M be able to visit me? Let's message M and see what he is doing for the holidays. M should come to my graduation. I definitely going to invite M to my graduation. M is like a father to me. It's not the same without M. Why did M have to leave me. M is always fishing. M needs to come back and see me. M should probably go see his wife in Scotland. I bet that is what M is doing. M didn't ever message me back. Okay he's in Scotland. I miss M, this is really hard. It's been one year since I have seen M. 

R asked me if I was allergic to smelly/scent stuff. I told her no. She wants to get me a present since she is doing secret santa with her staff. I'm not her staff. She doesn't need to get me anything. Why am I so special? What do I need to get someone else? How am I so special. I don't Deserve this. I'm really excited that R is getting me something. I've worked my way into R's heart. I'm R's little ray of sunshine. Are you sure you need to get me something. R, you really don't have to do that. Aww, you are so sweet R. How did R pick me, ME? 

Thank you God, I'm going to the Dr's tomorrow. I need relief. I need answers. I want to fix things. Maybe they will have suggestions. I can't wait to go to the doctor tomorrow. Maybe K will be able to help me with these fixations. I don't think I need a medication adjustment. These fixations are getting really out of hand. I can't wait to go to the doctor tomorrow. I wonder if this has to do with the holidays. Why am I fixating so much? 

I want to take a nap. If I take a nap I feel guilty. It's okay to take a nap right? I've been so lazy, I should contribute more. Mom, should I be doing more, I feel so lazy. Is it weird that I am so tired. If I sleep too much during the day, I'm waiting my life. If I sleep too much during the day, I won't sleep at night. I need to take a nap. Wake me up in an hour. I can't believe I took a nap. Why am I always so tired....

Then I wonder why I am so irritable. Do I need a medication adjustment. Do I just need to get in a regular schedule. Would going to the gym help. When you can't stop these fixations, they really impact you. It's difficult sometimes, but then there are other times I like to obsess over things like Frozen, or completing puzzles. 

There Is A Reason

     Often times individuals who have an Autism Spectrum Disorder will be asked why they do particular things. Sometimes people think its weird and want to know why and sometimes people want to have better insight as to how the individual thinks. Given that I see things from both sides, I tend to over analyze things quite a bit. I mentally document each time I had a meltdown, what caused the meltdown and how far apart the meltdowns have been because I want to learn to prevent them and I want to have them increasingly farther apart. I primarily try to answer why meltdowns happen so that they don't happen in the future. After a few months of doing this I have come up with some conclusions. Most meltdowns have an underlying reason that may be deeper than we sometimes realize.
     First and foremost, each meltdown I have is typically triggered by one thing that is stressing me out. Once I have processed through that one thing, I begin to realize that there are other things underneath the surface that have bubbled to the top. This is when I have learned that it is time to stop talking about the things bothering me and begin to distract myself. If I continue to talk about things, I get into a repetitive circle that then causes more anxiety for me and thus more frustration and more crying. If I distract myself, I am then able to calm down, sleep on things and if need be talk to someone the next day about my frustrations. The meltdowns aren't always caused just by frustration, but sometimes that frustration comes from a subconscious level in which something in my routine has changed and I don't realize it. There have been two recurring examples that I have finally picked up on.
      Transitioning back to my dorm at the end of the day can sometimes be a real struggle. Often times when I come back to my dorm at the end of the day and my RA or my Resident Coordinator aren't there to check-in with, I begin to get irritable. I try to distract myself and unwind, but sometimes it is difficult. I always chalked this irritability up to the fact that coming back after a day of classes and settling into the evening was a big change, but it is so much deeper than that.
      I never viewed my mother as a stay at home mother because she has always worked. My mother has had her own business for almost 20 years and she is very proud of it as well she should be. Fortunately or unfortunately, depending on how you view it, she has worked out of our home for most of my life. This has always been extremely convenient when my brother or I have been sick and it was also convenient when my brother and I would get off the bus at 3 o'clock in the afternoon. Each day, when we got off the bus, my mother was there to greet us. A typical afternoon would entail getting off the bus, throwing our backpacks in the foyer, going to the bathroom and heading for the basement to check in with our mother. This happened for 10+ years and has since become an engraved habit that I subconsciously still follow today. Unfortunately it's hard to do at the dorm.
     I have recently realized that my need to check in with my RA or my Resident Coordinator at the end of the day has been my brains natural way of adjusting to a norm that is no longer a part of my life. I would greet my mother at the end of the day for many years. Now that I'm in college, I don't have a mom to go home to, tell about my day, and give a big to. Today I enthusiastically come back to my dorm and hope that I have someone to look up to and talk about my day to. This has naturally fallen on my Residence Life staff. When I am unable to do this, this leads to irritability because it is changing something that I have known since I was in 1st grade.
     Friendships and planning events have also been extremely difficult for me this year. For quite some time, my RA and I would think that I was upset because people weren't able to schedule things. We figured it was because I like having a set schedule and a routine. I would always tell ask people if we could do something at a particular time and the answer was typically, "I don't know what I'm doing yet". This would often times upset me because I thought people made plans. Unfortunately unwritten rules of society change.
     Growing up, I had a lot of trouble making and keeping friends. I always wondered why people couldn't hang out. My therapists and my parents would always tell me it was because I had plan things a couple of days in advance. I always had difficulty with this. When I was able to plan "playdates" in advance, my mother would typically ask me exactly what I was going to do when I had friends over. I learned to plan things because I had trouble picking up on how to entertain my friends. I liked having my friends over, but often times my brother would have to entertain them. Today when I want to hang out with someone I feel like I need to plan something and plan exactly what I want to do.
     Now that I am in college, things have changed. I meet with my RA/friend every other week to spend some quality time with her. I alway ask her what she thinks we should do a couple days in advance because I have been taught to plan. This past week she informed me that she wasn't going to put the time and energy in to planning something. I was taken aback by this, but realized after a discussion with her that it wasn't that she didn't care, but that it really doesn't have to be an event like I was taught. Simply having her door open and me having access to her and knowing she was there to "chill" was what she was thinking. For example, this would be a good time to do our own things, maybe chill in the same room, listen to music and talk on and off as we pleased. As a child, you have play dates, as an adult you relax or partake in leisure activities. Once again, this is an unwritten rule that changes.
     Often times I will get into deep conversations with people who I trust because friends share how they really feel and share there deepest darkest secrets. Interestingly enough I am realizing that isn't exactly how best friends work. Typically as soon as I trust someone, I dump all my personal life stories on them. I'll constantly ask how they are, if they are okay or what is wrong. I thought that is what defined a friend, someone who you could share your true feelings with. What I am learning is that this is not the case. Friends are people who you share a sense of humor with, you converse with in short simple give and take chatting. Yes, friends do share stuff, but it isn't as much of a word vomit as I like to think it is. Give and take, take a long time to develop the friendship. It's not something that you share your life story and your friends. There is more to life than struggles, it's about the goofy stuff we do, the quality time, and the memories that are made!

I Bet They Have Aspergers

"I bet they have Aspergers", I say when someone isn't very nice about something! "I bet they have Aspergers", I say when someone does something weird. "I bet they have Aspergers", I say when someone does something stupid. I don't like saying, "I bet they have Aspergers", but I do and it comes so naturally to me.

Every April is Autism Awareness month in which the big evil organization Autism Speaks spread awareness of individuals who have Autism. I can't stand the organization because they have a belief that individuals who have autism can't speak for themselves. In April you will often times see things lit up blue to promote Autism awareness. What other things happen during autism awareness month? There may be a few walks that raise money for this horrible organization that uses hardly any of that money to provide services for individuals who are battling the condition now. As one person said, "finding a gene isn't going to help me find a job".

You have the Autism Awareness month events sponsored by Autism Speaks, including walks, documentaries and PSA's demonizing autism. On the other side of this, when it's not Autism Awareness month, you have the large media outlets sharing horror stories of mass murders. It seems like the majority of the time, the individual who ends up doing the killing have Aspergers: Adam Lanza, Elliott Rodgers. Do they ring a bell? If your not hearing about this your hearing horror stories of individuals with autism who have gone missing or parents who have attempted to murder their autistic child: Issy Stapleton and her mother. If you have ever seen Autism Speaks documentary Autism Everyday, you have seen a mother discuss the want to driver her autistic daughter off the Washington bridge.  Then there is the story of the ice bucket challenge in which peers decided to dump feces on and individual who has Autism during his challenge.

Speaking of the ice bucket challenge, people decided to come up with this really stupid idea in which you do the Twizzler challenge. Two people eat a Twizzler like they are Lady and The Tramp. How is that difficult? How does that show the pain of Autism? Then again, I don't want to show the pain, but who is going to want to donate money to such a good cause if eating a Twizzler is so simple? Why should I be upset over such silly things? Why am I upset that the challenge isn't showing the pain of autism if I am sick and tired of Autism being shown as such a miserable condition? Our world is really messed up.

We have all these problems in our society and all I want to do is share with the world how happy and productive people who have autism can be in our society. The fact that my parents were told that I would live in a group home and that I'm going to college. People who have autism have been great inventors. No one ever talks about those who have been productive. Oh yeah they do such as Mark Zuckerberg and Steve Jobs in which the media portray them as mean and nasty men who are successful, but no one gets along with. Then we have those who think the reason we don't have friends is because we don't want them. go watch the Social Network, why don't you?

Then there is me, ME of all people who want to show the world what Autism really is and then I constantly stereotype my own disability, I mean my own strengths and weaknesses. People with autism are humans that try just like others to connect with others, to maintain a job, to be happy. People with Autism are bright, intelligent people who have a passion for what they do. Yeah we have our weaknesses, but doesn't everybody?

I don’t wonder if people have Autism because they are acting out, I wonder if people have autism because I want to connect with someone.

What is a true friend?

      "Mom, what is a true friend then?", I often ask! Back in middle school I was still learning what it meant to be friends with someone and that there is a difference between friends and acquaintances. My mother would often times tell me that I didn't have any "real" friends, but some day I would developed a true friendship. I would often times reply with, "Does this mean Emma is a real friend?" Emma was probably the first friend I had; she was the friend I met in daycare and the friend who would come over every Christmas Eve to decorate cookies and exchange gifts. "We've known each other since we were 6 months", I would often times here Emma exclaim when she introduced our relationship to a stranger. As we grew older though, our interests grew apart and for the last couple of years we haven't had Christmas Eve together.
       Today I still battle with the question, "who is my friend, and who is an acquaintance?" I often times find someone that is nice to me and that I trust and I automatically think they are my best friend because they understand me. Unfortunately, over time I have realized this is not the case and these relationships end up revolving around me and my emotional well-being. I end up sharing my deepest darkest secrets and I end up just venting to these individuals which turns into depending on these individuals. I know, when you think of a friend, you think of someone who you are to depend on as we are all somewhat dependent on others. It's human nature to depend on others, but more in a social sense, a sense in which you are able to develop common interests and relate to each other on a more informal level that I don't totally understand yet.
      People often say that individuals who have Asperger's syndrome don't understand empathy, but its much the opposite of that. When I was younger, my mother once shared an article with me that described autism as a condition in which we actually feel the emotions of everyone around us and therefore look like we aren't empathetic because we shut down to deal with our own emotions. I really didn't believe that was the case for me, but as I learn more about myself I am realizing this is true for myself too. I've always been someone who hates to see others upset. I continuously feed off of the emotions of others and worry about how others feel to the point of anxiety. "Are you mad at me?" and "Did I do something?" are often times questions that I ask. Given these struggles with understanding who are my friends versus acquaintances and how I interpret empathy along with my ability to understand these concepts, I am better able to understand my relationships with others.
      Typically the people who I value as friends, are those who first and foremost understand me for who I am and are nice to me. Secondly, I love the people in my life who I know there particular interests. For example, I have one close adult "friend" who I love because I know how to please her. If I were to ever get a gift for her, I would get something that had to do with sock monkeys, the color purple, or something zebra print; A McDonald's sweet tea would always do the trick too.
      A lot of times people have talked about the different types of love and I definitely think my type of love is the giving type. I show my love by giving someone something that I know they will like. Often times this makes things harder to truly build those relationships because I don't always have the strongest conversation skills and I often times monopolize the conversation. The problem is that people want to be cared about and sometimes that means being able to put yourself in their shoes and understand emotionally how they are feeling which I don't always get. I also don't know how to really strike a conversation about something with someone without telling a story. Really, what do people talk about? I love telling funny stories and to be able to have something to talk about you need stories, but then conversations change and then I feel lost. I often times have trouble with change and when conversation changes, I don't always know what to add. Sometimes I'm still focused on what I wanted to add to the last conversation. Friends are such a complicated matter.

Goals and Growth

     I've been in school for two weeks now and I have already learned so much. I've even learned a lot about myself. Guess what? The meltdowns have been a little bit closer together, but it's not anxiety, it's growth. I'm going through a social/emotional growth spurt again!!! I'm learning so much and I have so many goals that I'm working on right now. Some of the goals that I'm working on, include  meeting people half way,  building social and emotional stamina, and being able to read my body more clearly and learn new copings kills.

     Ever since I've been at college, I've been extremely socially active. I go to events on campus all the time, but I always seem to go alone. The actual activity of going has kept me going; it hasn't been the friends that I've made. This summer I met with my Vocational Rehabilitation counselor and we set some goals. One of the goals we set was to meet people half way when it comes to what activities I participate in. Last year, I would often times eat alone because I wanted to eat on my own time and I would always go to events I wanted to go to, not events others wanted to go to. For example, I never wanted to go to the gym at 8 o'clock at night, but I'd love to go see a comedian. Sometimes my pod mates would want to go to an event, but it would be when I had to get school work done. This year I'm finally going to events with my pod mates. Today we're having a little league party and watching a game on television. I'm not a baseball fan, but I want to be with my people.

     A large goal that I have been working on is building social and emotional stamina. I've always been an outgoing people person, but I also like to go back to my room to reboot sometimes. In past years I've been able to do that. This year, it hasn't been as easy. I started my first part-time job as a full-time college student and I'm involved in a lot of clubs on campus. I'm also mentoring new students. It's all been great, but it doesn't give me much free time. When there is an event in the evening as there has been every night since I've started, I always want to go. Sometimes though, I end up melting down from exhaustion and the tears just come. Our school has an even every night for the first 3 weeks to get us acquainted with campus. I hate saying no to the events because I don't want to miss out on anything. This in turn has run me into the ground and then I ask myself why I'm crying for no reason at my age. My RA has been a tremendous help in helping me understand that I am going through a lot of changes. Among those many changes are of course the busy schedule, but most of my friends have graduated and my parents are in the middle of a big move.

     Coping with all the changes and excitement has been pretty tough, but I'm learning how to read my body a lot better. I've always been someone who over analyzes everything so I'm acutely aware of how my body works and how Asperger's affects me. I've learned a lot of coping strategies. When I work at the ice cream shop, I try to work on tasks such as stocking things instead of doing something that requires multitasking when I'm overwhelmed. In school this year, I haven't been reading my body well enough to realize that I'm exhausting it. I'm trying to teach myself that sometimes i need a break. After the second meltdown I had this year, I finally decided that I really do need to say no to things. Finally, last night there were 2 or 3 different events I wanted to go to. They were all back to back. I finally decided that I could go to all of the events, but I needed to go for short durations and take breaks if I were to make it to the end. I got to spend quality time with some friends I haven't seen for a while and then I got an hour break before the last event. I rocked it last night!


     As the year moves forward, I'm sure I will learn so much more about myself. One of the biggest things I have learned, is that a nice walk in the fresh air can help with anything. I can't wait to see how God allows me to grow over this new school year! :)

A shield: fixation

    I am a young woman who just so happens to have Asperger's Syndrome and a Generalized Anxiety Disorder. I also, just so happen to be in the process of moving. These two things don't go well together at all and have caused me to be fixated on everything. Given that I have Asperger's, I typically do get fixated on stuff, but lately I've been fixated on EVERYTHING.

     I am not always fixated on things to the extend that I am right now, but the fixations I have had lately are almost like a shield against all the changes I am going through: new bed, new room with purple walls, heck even the new house in general. I also tend to feed off of the stress of everyone else in my family too. The fixations aren't bad, but they are there and driving everyone crazy. I rather be fixated than anxious. If I am fixated, I can go to a happy place

   Two weeks ago, I was fixated on 4th of July. this one is a given since we have a party at our house every year. This year will be our last because, like I said, we are moving. I worried up until the actual party wondering if we would actually have anyone showing up. We ended up having 45+ people over to our house and we had a blast. As soon as the party was over, I was fixated on the next thing, Arts Fest.
 
     The previous week I was excited that a family friend would be coming to town to visit for a day and to see Art's Fest. Sadly it rained the day she was supposed to come, but I will see her in August. Not only was I fixated on having the friend over, but I was fixated on getting to see the tents and getting to have Art's Fest food: Scott's Roasting, Cowboy Kettle Corn, and lemonade.
 
      Once Art's Fest got here, I was fixated on the idea that I was going to see KJ on Sunday. KJ is a singer/guitarist who I grew up listening to at camp and she was coming to my neck of the woods. I got to see her and I even got my picture taken with her.

      Last Tuesday, I was fixated on the fact that I was supposed to be going to a family friend's house for dinner. I found out on Monday, that my father had to go out of town so we may have to reschedule. I was not having any of it because I was looking forward to dinner with friends and I don't like my schedule to change.
 
     When we finally decided we were going to the friends' house, I was fixated on the fact that we needed to bring and play Mexican Train Dominoes. My mother had to remind me a couple times that there were other younger kids there and it may be a little to chaotic for Mexican Train Dominoes.

     I'm always fixated on Frozen stuff. In fact my mother has to reel me in when i see something revolving around the snowman Olaf. My mother even made me a homemade Olaf blanket for Christmas and I still get pulled in towards the Olaf blankets at Walmart.

     At work, I'm fixated on everything to. As soon as I come in the door to work, I have to check to make sure all the cups are stocked, coffee drawers are filled, spoons dispensers are filled, and lastly write down what dates I need to take off for Dr. appointments or in the case of this week, write down my last day of work for the summer. God forbid I go and scoop ice cream until that was written down.

      The fixations aren't bad, but they really are a shield to protect me against the anxiety. Sometimes when i fixate, I feel fortunate. Other times fixations can get me upset. For example, if I fixate on something in my schedule and then it DOESN'T HAPPEN, that can be very bad. Maybe I just have a love hate relationship with them, but a few have saved my sanity.

I feel Autistic

     Sometimes I feel normal and sometimes I feel autistic. Most days, when I am my cheery self, I feel normal. When I am overstimulated, I often feel more autistic. It's not easy to explain, but some of the feelings make me happy and some of the feelings make me frustrated.

     Today, I felt autistic. I didn't want to talk. I wanted to stare in space. I wanted to stim. This past week has been a really long week, and it has been hard for me to handle. It's been a good hard, a challenging hard, but hard none the less. At 3:05 during work, I finally melted down. I'd already promised myself this summer at work was going to be different and I wasn't going to shed a tear. Well that planned got messed up today. By 3:15 I was all better and back on the floor working.
      If you notice the beginning couple sentences of the previous paragraph, that's kind of what my thinking is like when I feel autistic. I don't want to talk and my answers are short and sweet. If I can, I try to get away with one word answers or yes and no answers to questions. God forbid, I answer more than that, I start breaking out in tears. Tears are frustrating, zoning is not. When i can zone out, I can think about my own stuff, not worry about the expectations of the world. This makes me feel happy. I begin to calm down.
     When I feel autistic, I also begin to fixate on things more. This week, my fixation is arts fest of course. I am determined to make it to arts fest. When I got in the car after work today, I started talking to my mom. I used as few words at a time as I could and I still broke down again. When expressing myself and reassuring myself about art's fest, I finally broke what I wanted say down to, "Sunday". My mother replied, "yes, we will go to arts fest on Sunday". I was happy. The short one word phrases are always a noun.
     Over the years, I have had experience working with kids who have autism. Often times they will say what they want at which point we coax them to say, "I want...". With my understanding of the way I think is that the child is just saying what they can to get there point across without exhausting themselves. It may not be that they don't know to do it, but that it's exhausting. The child is most likely overstimulated by the world around them and trying to process what they want. Once the child goes into meltdown, they have lost patience with trying to express their needs and wants. It's something so simple, but yet it's so hard to understand. 

Charley

     Charley died! Charley is no longer on earth with us and it's really hard to believe. Two years, I didn't really get emotional about stuff outside of my own little sphere. Just last week, I was talking to another individual who has Aspergers and we were discussing how we reacted to particular events. "I don't cry like most people do when someone dies", I said. As I've gotten older, it has gotten harder. Lack of emotions can be one advantage of having autism. 

     I was accepted into the occupational therapy program at school in December and I start in August. I've been checking my school email, on the school portal, everyday this summer. Along with your school email are various other things including announcements. "Student Death Announcement", read one of the announcements. "Seriously, again?", I thought. We have had a lot more deaths at my school in the past two years than is normal. It's sadly one of those things you get used to. I don't know if it was coincidence or not, but I just felt this feeling in my head or in my heart that when I checked the announcement, it was going to be someone I knew (not typically the case). In fact it was.

      It was one of the first friends I made my freshman year in school. We haven't been really been close for a while given that we are in different majors and have different classes and interests, but she was one of the first. Charley was quirky, quirky in such a way that was so awesome! Charley had a hilarious shirt I remember that had a big cat on it that frowned. The caption surrounding the cat was, "this is my happy face". I'll never forget the day Charley was sitting in the common room as my mother and I walked in, my mom having never met her, she stood up, turned around and introduced herself wearing a wonderful Thor helmet with a plastic toy axe! This is just a glimpse into the life of Charley. 

     As my freshman year progressed, we began calling her chuckles, because her best friend, an RA was nicknamed Smiley given her last name was Miley. Eventually her name became Narles, and I'm not really sure why, but it stuck. That's what we called her. I remember one evening, we decided to tackle the boys and convince them to do face masks with us too. Charley will truly be missed. I rally wish we had more time with you Charley. It's really hard to know you are gone. :( 

One Year Ago: A Reflection

     Approximately a year ago, I stared seeing a new therapist due to personal and family issues that needed to be resolved. At that point in my life, I had written a blog titled Shit Happens because there were multiple things that I was struggling with and for all I knew, I was falling down the rabbit hole. Today, I saw that same therapist and as I sat there telling her what I have been up to this summer, she was quite surprised.

     Last summer was filled with tears and almost 40 hours a work a week. I don't really have a better way to describe it than that. This summer has been filled with new friendships, speaking to high school kids with Aspergers, and new adventures. Last time I saw the therapist, I had informed her that I recently biked 8 miles with my family over the previous weekend. This time, I shared with her my recent kayak adventure with a new friend who really enjoys wildlife. That same friend and I went to a semi-local wildcat rescue to see the big cats. My therapist informed me that she would have never thought I was a biker or a kayaker, but she could she me in nature.

     The changes that my therapist is seeing in me are completely normal. The things I have been doing lately are things that I enjoy doing. I'm not surviving, but I living now. The first time I walked into my therapist office, she saw a girl with tears in her eyes that just screamed Help Me! Today as I walked into her office, she saw the real me, not the bad side.

     I am truly a young woman full of life who loves adventure. I love kayaking and taking nature walks. I love bike riding and climbing water falls. I love puzzles, reading and scrapbooking when I need to entertain myself. I love people and sometimes I wish I had more common interests; things that others enjoyed more.

Glitches

     Glitches! I haven't been having any meltdowns lately, but I have been having glitches quite frequently. Growing up, I would have meltdowns when things changed, when there were thunderstorms or when there were sirens. Close family and friends tell me I cried when I saw stuffed animals too, but I don't remember that. As I've grown older, the meltdowns have become less frequent and less intense. The last time I had a bad meltdown was probably back in October. I'm happy I don't have meltdowns very often, but the glitches can leave too.
     Once returning home from school for the summer, I picked up hours at my ice cream scooping job. After dealing with personal issues last summer and the chaos at the ice cream scooping job, my boss wanted to start me out at 4 hours a day which isn't bad, in fact it was perfect. This week I will increase to 5 hours a day. :) The 4 hours that I have been working, have been right in the middle of the day. I normally arrive home around 3 o'clock in the afternoon. This week, I will probably start arriving home around 5.
     Upon arrival, my mother usually comes upstairs from the business she runs in our basement. Sometimes my parents like to take a nap and sometimes they like to go out to a movie or do something fun together. As of late, I've come home and had a glitch. The glitches aren't meltdowns, but little blips on the radar as opposed to smooth sailing. Think of the glitches as little waves in the ocean and the meltdowns as the big wave or a tsunami. Most of the time, I irrationally get annoyed with my mother for something, she goes on her way and does what she wants to, I rest and everything is right with the world again. There is no arguing or back talk, she knows not to do that.
     Don't get me wrong when I say that my mothers knows not to argue with me. For people with autism, it doesn't necessarily mean that we are getting away with what we want; for people with autism, it means that there is not rationalizing with us when we are set in our ways. Often times I like to think about the irrational moments in our lives as a run-away train that no one can stop. Give us time and we will come around and learn from the situation.
      These meltdowns are much different from the typical tantrum a child has. For the typical child, it means trying to get something they want and trying to have control. For the child on the spectrum, a meltdown means that something has overwhelmed them or upsetter them an they need to reboot. The most important thing to do when we have a glitch or a meltdown is to give us space and we will come to us when we are ready. People in my past have insisted on rationalizing with me, which has in turn scared them in the end. I have never acted in an aggressive manner, but I have gotten loud, used bad language and by doing so have scared the untrained individual.
     I don't like that I am a young adult and these happen, but it's the honest to goodness truth. Sometimes it happens.

Self Conscious

     I have always been someone who has to be exact about everything including the exact developmental age I'm had. For quite sometime, I was under the impression that I was about two years behind due to my Aspergers. I had also been under the impression for a number of years that once I turned 21, that my brain would automatically stop growing and changing, but the more I learn, the more I realize that I am still maturing and my brain is still growing; my brain is just growing at a slower rate than the typical brain. Given this information, I have a feeling I'm heading into another "rough patch" developmentally speaking. Do you remember your years of puberty and the hell you went through? Imagine breaking that up more over time and still going through some of it in your 20's. Currently, I'm going through the phase where everyone is judging everything about me.
     The typical girl fears her hair being messy, her weight being too much, or her face being covered in too much acne. I am currently worried about my weight (I probably need to lose about 60 pounds) and my social skills. I'm at that point where I think that everything that comes out of my mouth sounds stupid or awkward. If anyone has known me for any amount of time, they will realize that I apologize way too much. Well, with this phase I'm going through, it's even more now.
      Some of the multiple "social skill" things I worry about are interrupting, making an order at a restaurant too complicated and hugging people too much. In any case, I've pretty much lost hope on gaining the ability to not interrupt so much. It's easy enough to order food at a restaurant, but then when you want something with out a particular ingredient, or you want something extra, I feel like a complete idiot.
     When I look back at letters from my preschool and kindergarten teachers, they would even write home that I hugged people too much and told everyone about how much Jesus loved them. Ha, I still crack up at that. I am proud of my beliefs, but now that I am older, I'm much more open to everyone else's beliefs. When i hug people it seems to be this huge security for me. Everyone who has autism, has sensory issues, but they very quite a bit. I can't stand loud noises: sirens, yelling, and some music. On the other hand, I sleep with a 16 pound weighted blanket and need a hug when I am upset. In turn, this ends up meaning that I hug my mother, RA, or whoever is helping me through a problem at that particular time. Sometimes when I get excited to see someone, I give them a hug, but I have to learn that not everyone likes hugs.
     As you can see I am becoming so self-conscious about the little things. I'm constantly over analyzing all of my behaviors. I seriously thought I kind of skipped over this phase. :(

Awesome Woman Exemplar

     Yesterday, I was among 33 women chosen from my campus to be awarded the Awesome Women Exemplar Award. I am proud to have won something with such high honors even though I know there are other women who may have deserved this even more than me. I can't say thank you enough to the individual who nominated me and the individuals who made the beautiful reception such a success.

"I have had the pleasure of working with Simply J very closely during her time here at PCT. Jordan was quick to identify her own strengths and weakness while in this new educational environment which was a tremendous adjustment for her. Jordan was eager to learn various ways to effectively communicate with faculty, students, and staff on campus as she saw the importance of collaborating with others to further her understanding of her major, the coursework, and developing interpersonal skills needed currently and for life after college. She has proved to me to be a remarkable woman in how she overcame barriers that she has experienced during her first year. She has demonstrated to me from the beginning that she was dedicated to her study and is very excited about it." D

"Over the summer, Simply J assisted staff in our office with a summer program for High School students grade 9-11. She was able to share her experience and provide feedback to educate this student population to assist them with transitioning from High School to Post-secondary .This year she assisted our office by taking on the role of a social mentor that is targeted to assisting current students with engaging into the college community. The social mentor also assist students with areas of executive functioning. Simply J has been a delight tot work with while in this role. She takes her work very seriously and has a lot of passion for assisting other students. I definitely admire this passion and know that she has a bright future ahead of her in her field while working with people. Jordan has gone above and beyond hr roel as a mentor and has become one of our most dependable mentors int he program. She is an asset to our program and I have confidence that others will benefit from her". D

Taking Advantage

     People have taken advantage of me my whole life because I am an innocent, gullible person who can easily be fooled. I would have thought that as I grew older I would get better at detecting such things, but I haven't. I can vividly remember the girls throwing sand on me going down a slide, the girls who sang "There she goes again" while we ate lunch because I was trying to sit with the cool kids, the girl who threatened to call the cops on because I was "trespassing" because didn't believe I had the same Godfather as her and I was "trespassing" on her friends property,   and now someone sneakily pretending to be in the same room as me, having me hunt her down so I could catch up with her and to later learn she wasn't there after all. What other things, bigger things in the future will people do to take advantage of me?
     Often times growing up in my neighborhood, I would ride my bike around and ring doorbells just trying to find someone to play with. I would often end of at Kara's house where we would play in the basement, play outside, and pretend A LOT. Of the many things we pretended to be were mom's, camp counselors and ride attendants at water parks. I always seemed to get the "dirty job" and would be taken advantage of. The one day when we decided to play "water park", I was a customer going down a water slide off the swing set. I would climb up the ladder and go down the slide as they poured water on me and the slide. There was a reason I was the only person going down the slide. The water in the bucket was mixed with this oh so wonderful stuff called sand. After a few times, I finally realized what was going on, but had hope that maybe someone else would go down the slide or that the next bucket wouldn't have sand in it. I went home that night with sand in my hair and gritty teeth. I'll never forget it.
      In fifth grade, my teacher told the class that we better make friends now because once we got to middle school, it would be a lot harder. After that, I decided to start sitting with the "cool" kids instead of the table I had been sitting at. The table I had been sitting at, had been the table of kids who were mostly in learning support together all day. I wanted to try and make friends with my "neurotypical" peers. As soon as I started sitting at the new table, they realized that I was this wonderful ball they could bounce. They new they could get me all riled up and cause me to react or bounce. They played "not it" games and it wasn't like we had to do a chore. It was more along the lines of being characters from movies such as Dumb and Dumber, I always ended up being the worst character. I remember them saying I was the character named Mental? I still haven't seen the damn movie.
     Then there was that wonderful day when I was playing with neighborhood friends in one of their backyards. I guess the parents weren't home and we were old enough to be alone. I said something about a man two of us mutually knew being my Godfather. He was my Godfather, but he is now deceased. The girl started cornering me into showing "proof" he was my Godfather. What proof? I have supposedly have pictures of him and I and his family and my family went to see Sesame on Stage when I was little. After not showing proof and refusing to leave because I did nothing wrong, these preteens threatened to call the cops on me for trespassing. Supposedly this man was this girls Godfather also, which meant that he couldn't be mine. it highly offended her that I said such a thing about her deceased Godfather.
     Now today, I'm struck with some of the same stupid situations I dealt with in Elementary and Middle School. Last night I was at a magic/comedy show thing on campus. There was a lady behind me that knew me and had a friend who has since graduated that knew me. The lady sitting behind me must've texted the other girl who had previously been my friend until we had a falling out last spring. Next thing I know, the girl who I had the falling out with, is texting me saying "I see you". I was looking all around the auditorium and couldn't find her. I asked her where she was and she said she wouldn't tell me. She told me I had to come and find her. I asked her to give me a general sense of where she was and she told me birds eye view. Next thing I know, she tells me exactly what I am wearing and is accurate. I find out at the end of the show that she wasn't even there, I looked like a gullible fool, and she was texting back and forth with the girl behind me who was giving her the details.
     I look back at these situations and wonder how vulnerable my little soul is. I think it is one thing to be young and not understand. That fact that I am a young adult now and people still take advantage of me, scares me. It's still been little things in the grand scheme of the world, but still. What happens when I get into a romantic relationship with someone? How will I know if they are taking advantage of me? They could say they are at work, and really be cheating on me. I wouldn't know the difference. Then there are those suck ups. People who break up and then want to get back together. How vulnerable will I be then, since I like to be friends with everyone. Will I trust that person again and want to make up? these things scare me and I'm not sure what to do. Currently I'm in the process of working with a newly developing autism program in our area and they want me to be on the housing committee. I happy that hopefully I will have a safety net my whole life. It will be interesting to see how strong the safety net is though. There is only so much others can do.
   

She's special

     It's that time of year again, where classes are starting up. Every semester I am given a new set of teachers and every semester a new set of challenges. Sometimes the most challenging thing is to receive the proper disability accommodation in any given class. Sometimes its a struggle to access an appropriate note taking system, other times it's a matter as simple as trying to access my curriculum in an appropriate way from the front of the classroom, given my visual impairment. I know what's appropriate to ask for and what isn't, but sometimes professors have a different idea in mind. Most semesters I run into a least one professor who isn't flexible. This semester's problem is note taking.

     When I originally requested disability services at the college I'm attending, one of the accommodations I was given was a note taker. Even back in high school I never had a note taker. There was typically a paraprofessional in my classroom taking notes for another individual and I had access to the notes, but it wasn't in my IEP. The paraprofessional was able to help me fill in the minute details that I would miss and I was allowed to use a recording device for audio. That was it. Now that I'm in college and have specific labels, I automatically get specific services, one being the notetaker.

     This semester, I have some professors that are strict about use of note taking devices in their classes. I prefer to take my own notes via my computer and microsoft word. I really don't like trying to decipher notes that other people have taken. On the first day of classes, I sat in on a class where the teacher insists that if you use a computer, you must sit in the back. That's all fine and well for most, but I also have a visual impairment and must sit in the front row. When I brought this to the teacher's attention I was asked, "what do I tell the other students, when they ask?" Fortunately, I am extremely open about things, but that is extremely awkward none the less. I feel like the only thing the teacher could say is, "she's special".

     Over the years I have been extremely open about my disabilities, but in the past it has been difficult to explain things to my peers. It's not a secret if you have a disability, but people don't know how to take it when they are told you have one. Most of the time, they just back off as if your some sort to of alien. When I asked the question, I really didn't know what to think about the situation. As of right now, I have dropped the class for other reasons. In the meantime I still have other classes where computers aren't allowed to be used and I still face the same difficulty with peers. As of right now, it looks like my teacher's are just going to tell people I'm special. It doesn't feel right, but I don't know what to say.

New Year, New Beginning

     It has been forever since I have blogged here (publicly). The past year has been an emotional roller coaster like I haven't experienced before, but things are looking up. This past year, I made Dean's list for spring and fall, my resident's coordinator moved to Scotland, I became a social mentor (opposed to mentee last year), I got accepted into the OT program and attended to school trips to NY and DC. There has been learning, growing, laughing and crying. I'm going to kick this year off with a photo update!!!

Started the year off with a presentation from John Ratzenberger. Our school just celebrated its centennial in 2014 and this was on of the guest speakers! 

Traveled to NY in March or a spring break trip with friends to serve the Habitat for Humanity of Westchester

L Graduated from high school and I ran into an old high school teacher of mine. I don't think my brother would be happy if I posted his picture here. :) 

Went to Applebee's on Laura's Birthday and got huge pitchers of water as a joke since she drinks a lot of water. Laura you are a rock star and we love you!!! 

Went to wingfest with E! This is how I spent most Wednesday's with a friend and it was a great way to get out of the house! 

Spent most weekends at local state parks walking and talking on the nature trails. 

Spent many days this summer at the Arboretum with family and sometimes even friends! 

Reunited with Laura before I had to travel back to school! She came to get ice cream at the Creamery and stop by to say hello since I had to work

Susquehanna Valley Fall retreat! We partnered up with two other Cru campuses for an awesome get together. 

Went to pick out a Christmas tree! This was the first time Grandma was able to come with us to pick it out! 

Said goodbye to my resident coordinator for the past two years. He has helped me adjust to college and overcome some of the obstacles of Asperger's 

Accepted into the OT program at school. It took a year and a half to do so and it was worth every second! 

Finished the year with a trip to D.C. with Cru for the Mid-Atlantic Regional Conference!