Sisterly Reflections

     Seventeen years ago today, I welcomed my little brother into my life. A day later I went to the hospital to visit him and I even got to hold him. I was only a toddler at the time, but I was so excited to have a baby brother. I was determined to help my mommy take care of this little bundle of joy. To this day I love my brother with that same exact love, but we show it in different ways. Its not so much about how we get along today, but the experiences that have lead us to where we are today and the happy moments in our lives together

Snort
    Every child learns their animals at a young age or for the most part. We like to experiment with our voice and learn how to pronounce words. Sometimes in the process we pick up other ways to get our message across. During our early years, my brother and i made up our own words. I ended up calling elephants blemit's and my brother called rhino's, snorts which I find absolutely adorable. The medical geek in me even finds this kind of amusing since rhino actually means nose and you snort with your nose. Maybe children are smarter then we think. 

Invisible Dog
     My mother was never a stay at home mom, but she did have her own business with flexible hours. We still went to daycare though. During our daycare years my brother met a little girl who at the age of three he declared was his "girlfriend". I think they probably "broke up" when they were about five because they went to different schools and were interested in different kids, but they still played soccer together. 
     All kids want what is cool and somehow his "girlfriend", found out about this really cool invisible dog that you could take care of. My brother thought this was the best toy invention ever and begged my parents for one. We were down in disney at one point and my father showed my brother the invisible dog. The invisible dog was a wire with a wire harness/muzzle thing attached. My brother looked at the toy and realized there was no dog and then looked up to my father in utter disgust and declared that he didn't want said invisible dog. 

The Hat
     I have always been a rule driven person, but my brother has always been the one to push the buttons when it comes to the little stuff. He's a typical kid or now teenager. Several years ago we decided to go to disney world with some family friends. During our trip there, we went to a sit down restaurant, which we never do there. It was a great experience, but if you have ever been to the Prime Time Cafe, it is a hoot. At this time, my brother was still unaware of the fact that it was impolite to have your hat on at the table. My brother was asked by the waiter who was our "mother" for the night to take his hat off a number of times. He refused to take it. Eventually our waitress physically took the hat from my brother for the remainder of dinner. Of course he was allowed having it back at the end, but to see his reaction was hilarious. I think now my brother knows how important it is to take your hat off. 

Slimed
     Yeas ago we decided to enjoy our spring break at the nick hotel. One of the various activities that you could participate in was slime time live. We filled out an application and were a team picked to compete. At this time speed stack cups were a huge deal. Anyway we got picked to sit in the seats in fron of a huge crowd with the chance of being slimed. I got the fortune of sliming my little brother in the face. He totally deserved it after all fights he has picked with me. 

The Past 17 years haven't always been easy, but they sure have been interesting. My brother and I will always be together during happy times and during hard times.

Don't say that!!! Its a bad word.

     We all know its autism awareness month. I am extremely happy that we have a whole month devoted to autism, but there are some negative things about it that most people don't know. To be perfectly honest, living in an aspie world and putting up with such things is driving me nuts. This month is Light It Up Blue for autism. Most condition awareness programs have a color, but autism's blue color is bad because its not just about autism its about the overpowering organization who promotes it.
     Most people in in The United States have heard of Autism Speaks. It is a huge organization that is run by money. They are a web based services that gives screening tips and basically compiles all news sources about autism each day. They make you think that they are raising money to help people on the spectrum, but they are raising money to have a bigger voice. The richer you are the better you are as a business.
     If you actually look at there website, you won't find anywhere that Autism Speaks itself provides services to families. When you look under the services tab, they show there campaign, there blog and other resources that you could happily look up on the internet by yourself. They don't have chapters, therapies, conferences, or research. Under there research tab, they have all the news stories of other researchers. When you look at where the money goes, the majorities of the millions of dollars made every year go to the president and what not.
     Now when you look at the title, it gets even worse. Autism Speaks!!! What do you think this means? Well if you go to their youtube channel, you will clearly see that there belief is that people with autism are locked inside their own mind by the devil with no voice or chance at life. We need to feed them and give them everything in life. Are you kidding me? I was told that I would be living in a group home as an adult and here I am going to college. I was never an unhappy child because I couldn't communicate properly. If you have the will, energy and right supports, you will succeed. What makes Autism Speaks think that feeding in to everything thing and telling the world that the devil is inside of them is giving them support? Use the damn money to go toward the services so they are terrorized.
     Now that you have a little background, I want to share with you the whole autism awareness month part. I think autism awareness month is great, but I would be much happier if it was a rainbow theme as in the puzzle pieces design as opposed to the blue puzzle piece design. By supporting autism speaks, you are supporting the demonizing terrors of autism, but by celebrating autism in life you are supporting awareness and success of individuals who may need help but are going to live!!!
    

Laughter is the best medicine

     True face!!! The past couple days haven't been rough, but they have been interesting to say the least. I am always a happy person, but just like anyone else, I also have emotions and things that tick me off. There have been a few things the past couple days that could have ticked me off and somewhat did, but in the end I just laughed. Laughing was the best solution and I am so glad I found the laughter in me and found that it helped.
     Friendships are a never ending battle for me. I swear I feel like a little kid where I am friends with someone one day and enemies the next. This is especially happens on the job with coworkers. Don't get me wrong I love my coworkers and I love my supervisors, but sometimes they tick me off and sometimes they are just plain disrespectful. The past month has had a few rough spells. I have had two girls on two different occasions say some pretty sarcastic and extremely rude things to me.
      The first time this happened at work was about three weeks ago. I got really upset and went and tattled to my boss. I explained to my boss that I had Aspergers and that sometimes I am a bit more sensitive, but this person bothered me. I told them that I admit I don't get sarcasm all the time, but there are lines to draw. I have an idea of when someone is being sarcastic to be mean and when someone is just goofing off. It takes time to learn this with people, but I do.
     Let me back track and tell you a little bit about my first job first. I started volunteering at an adult daycare when I was about fifteen years old. I eventually got hired by them and have worked there ever since. My mom had done business with them since she sells t-shirs and stuff. My mom had a strong connection with them and has a strong connection with them to this day. If there is a problem at work my mom hears about it. Its not because my boss is tattling, but because she wants to help me. She handles me very patiently, but also has high expectations for me. We work things out and I feel comfortable with her.
     When I came into this new job, I came in all by myself to apply and be accepted. There was no mommy or daddy around. As I grew more comfortable with the job I felt more willing to talk about my parents and my family. I figured with a larger business like a creamery, you would have a boss that told you what to do and that was it, but its not. The bosses at the creamery treat us all on an equal level and expect acceptance of all. The bosses to an extent are our friends. When there is down time they kind of just hang out with us and we share funny stories. I'm sure they will never let me live down the story of the town next to me being poor for instance, but thats another story. They are our friends who give us guidance as we need it. They are there for us when we need them too.
     As I got more comfortable with my bosses I started to talk about my family. The fact that I have a brother and I would talk about my parents. My bosses friended me on facebook which I was half tempted to do due to professionalism, but they are our friends not our enemies. As time went on I was able to share more information like the fact that I have autism. Sometimes my mom goes to the creamery to get cream cheese and will come home and tell me someone said hi. My coworkers aren't ashamed of there parents or aren't judgmental of my relationship with my parents. Its great.
     After going through the whole conversation with my boss, she took care of business and had absolutely no tolerance for disrespect of others. Within fifteen minutes of talking to her my coworkers were working like I have never seen them work before. It was great, but I was still a little nervous. I worry about acceptance a lot. I finally got over that then something else happened.
     On Saturday i had work again. Once again someone said something really disrespectful in a sarcastic way. I had been perseverating on something and it wasn't my disability. Fancy that!!! For some reason they weren't going to take any of it though so they finally snapped. Instead of acting like a baby I went to some of the people who I trust at work that were my peers and not my boss to tell them I was upset and I didn't like it. I told them girls were being bitchy to me again and then I told them what happened. I stepped off the floor for a minute to get a drink and ran into my supervisor. I told her that people were being bitchy again and she said she knew and she already heard. It just makes me smile that these bosses who I came to not expecting anything are so gracious and care about there staff. I may have had to take a couple breaths, but in the end I just had to laugh and tell my self that sucks for them that they don't know how to be happy and respect and be happy with the joy in others. Following this I had to give a huge belly laugh though.
     Earlier on Saturday, I had broken my glasses by accident. I picked them up and they snapped. I got really upset because it made it harder to do my schoolwork that was due today. My parents told me some of the stress wasn't the pain from the glasses being messed up, but just knowing. That was true. We tried going to the eye doctor to get them fixed, but they were closed. Now what? My dad taped up my glasses and I decided to name my self dork face for the day. It just turned into a big joke. I had to laugh and not get so upset. Everything was going to be okay, I just needed to laugh. It did the trick, but later that night I had some visitors at work who decided to tape there glasses so they could be dorks too, which just cheered me up even more. We took our pictures, but I'm a bit too embarrassed to show that one. But we laughed it off and now my glasses are fixed.
      Today things got even more interesting. Let me start of by saying that I live in a really small down with a huge abundance of doctors. This means that it just so happens that two of my neighbors just so happen to be two of my doctors. None of which was by choice, but all of which was pure referral and finding out afterwards. We aren't a real social neighborhood so we hear a name and think they might live here, but aren't sure. Anyway, I got done with my doctor's appointment in a really small office. I walked out the door at about lunch time to check out. My dr.'s office in the office is behind the check-in desk, so when I walked out I could see who was on the other side. As I walked out something was clicking in my head that it was my neighbor and that it just so happened to be my neighbors wife. I finally was close enough for her to say hi. I told her that I wasn't sure it was her and then I said oh wait, wow you look NICE today as if she never looks nice. She took a day for herself and prettied her hair up and were a really nice t-shirt. As I said this my doctor chuckled because he knows I have aspergers. Thank God both him and his wife know since they are my neighbors. I see his wife occasionally walking the dog in the neighborhood so she could have had all the reason for me to think she normally looks crappy!!!! She doesn't normally look crappy, but she looked nice today. As I walked out I just thought how awkward that was. Everyone knew what I was saying but once again we all laughed it off. It was one time that my intonation was off. So many times people talk about having monologue voices in autism, but I don't. this time I think I slipped though. We laughed and we are all fine, but man there have been some "funny" things lately!

Innovative Programming!

     I made a last minute decision this past week to go to Penn College's open house. If you didn't know already that is where I will be attending school in the fall. The open house was primarily for prospective students whereas I am already an accepted student. As we entered the campus, they had signs guiding us this way and that way as to where to park. It was really cool and you could tell they had it very organized and that they cared. When I went through registration, I got a personalized schedule of events that I could attend. The first stop was the Occupational Therapy lab.
     In the Occupational Therapy lab, we got to meet the director who will be one of our professors the first year; the college is really small. We also got to meet with current students who were able to give us all the gossip of what to do and what not to do. They also told us what professors to stick with and which ones they don't like. Then I got to go explore all the cool sensory stuff and they had a makeshift snoezelen/multi-sensory environment. They are a therapy room that originated in Europe, but are becoming more popular in the United States. They had ball pits and thinks to touch and all sorts of stuff. I need to focus on my anatomy.
     When we were done with the occupational therapy, we went out to lunch at a bagel place that was alright. We had hoped to go to our favorite chicken place, but it was closed. After the bagel place we headed out to find dessert with no success since we had time to waste. Then we arrived back on campus to attend the disability services session.
      During the session we learned about the supports and services we can receive at the college. We also got to meet the director and she is a really nice lady. I got to ask her a couple questions and I asked her about there autism programming. I thought they would have a support group or counseling, but they have something way better. They have created a program purely because of there passion for individuals on the spectrum. This is a small college with only one disability specialist and her assistant. They are creating a new program that will help us all exceed. There really shouldn't be any reason that I won't next year. The program has three components.
     The first part of the program is an early move-in program. Typical students move in on Saturday. We will move in on Friday. Prior to our move in, we will have volunteer mentors that will have gone through a training the day before. We will meet our mentors and disability services on that friday for orientation. This is only for kids on the spectrum. We will do skits and some role-modeling about handling different experiences on college campus including approaching professors and faculty, more specifically about our needs.
     On Saturday morning we will meet up with our mentor and they will help us get settled with our id and all sorts of stuff before everyone else moves in. That leads me to talk about the second part of the program. They have a program starting that will involve mentors. Every student on the spectrum who discloses it will be paired with a mentor. This mentor will meet with them five hours a month. This meeting could be to attend a social event if were insecure, or to help us with our organization. They will be there for us, but we can also be independent. The third part is for kids still in high school so I don't know much about it.
     My mother and I walked up to the director at the end of the meeting. I was a bit nervous after all the information from the day. I think it was safe to say I was on information overload and overly tired from the past few days. She said that she had students that met with her once a week to go over their schedule and she sends them a color coated schedule that they can then tweak. The schedule she sends includes a structured time for studying, classes, clubs and the gym. They really want us to exceed and I love how much they really care about what they do.
       I wish other college's had programs like this! Its so exciting!!! :)

A Major Catastrophe

        Last week I was scheduled for placement testing for college. The college I am going to be attending is a technical school that requires placement in both math and reading. The test takes about an hour and just tries to measure where you are standing since coming from high school. It shows what material you have retained and what material you need remediation in.
     When we were given my placement test date, my parents decided that we would schedule a campus tour. They hadn't seen the campus like I had and I am going to be attending college there next year. When we schedule the tour, we were unaware that it would be pouring down rain and I have officially discovered I am not a duck.
     Sensory issues are a huge issue (sometimes). Being a duck or someone who likes water would not describe me. First off, when I was getting prepared, I cared more about my entertainment needs on the road than I did about what I wore for the weather. That should tell you something and if you don't know what I am going to say next then, well you don't know me.

     In the midst of worrying about what I was going to wear, I made the CHOICE to WEAR MY CROCS. This was a BAD CHOICE on such a RAINY day. Really, I did think about this. I thought that my crocs are waterproof because they are rubber and the sole is a good inch thick. So it wasn't all a loss of common sense. What I didn't know was that the pouring down rain would collect to a total of 1-2 inches of rain on the ground at all times. This would lead you to believe that maybe I could scoot by with crocs, but NOOOO. The water was just high enough to seep into your shoes, never mind the splashes that happened with every stomp in the black puddles. If you know me I have this sixth sense for standing in the wrong place at the wrong time. I will be the one who kicks the crumbs that were swept up across the floor or steps in the puddle of oil at our local grocery stores parking lot. I just don't see stuff.
     I took a deep breath and thought about this. My feet were freezing and I'm pretty sure I was drenched in water from my toes to my knees, especially with all the water I stepped in. I'm not the one who sees stuff, nor am I the who does stuff lightly. I was the one most likely to break a crayon from drawing to hard as a child. Lets put it that way. Of course when it comes to shaking hands, I guess I can't shake hard enough. Who Knew? I came to the conclusion that even though my feet were wet and I had to sit in testing for an hour with wet socks, crocs and pants, it was way better than sitting in wet underwear in your psychologist's office in seventh grade. True story!
     I finally made it through lunch and the testing. I knew I would be okay. I could handle wet socks even though I couldn't stand the feel of rain drops on my arms. The rain drops just hurt so bad as they hit against my skin. Think about when something startles you. That jump and that pain or skip of a heart beat you get. Think about that happening every time a COLD rain drop falls on your skin. You never know when they are going to hit or where. Even if you did, its cold.
      On the way home, I took my socks off and discovered that wearing fuzzy socks was not a good idea either while walking in the rain because they really absorb water; probably about a pound or maybe even two. Try it someday. I thought I was done for the evening and then I got a text from my friend asking if we were still planning on going to Rita's ice after dinner. Great, I had been craving the ice since they opened. We were finally going, but I seem to always go to Rita's when it rains. I don't know if its my luck or what.
     I told my friend that it would be great and to meet at my house at a certain time. I put my shoes on the shoe shelf and got cuddled up. Okay, maybe thats a lie because I never put my shoes on the shoe shelf because I am too lazy and just kind of through them there. Anyway, they were inside and the mammoth fur inside them was soft but thin. Remember those socks I told you about that absorbed all that water? Well when I went to put my crocs back on they were STILL DRENCHED.
     If you've ever seen the veggie tales or have been raised with them, you probably know the hairbrush song. At this point in time, I am pretty sure that this song sums up the situation and I was not going to leave until I found a different pair of shoes that were acceptable. That meant that I wasn't going to wear sneakers which was nearly impossible because I don't have much else. I have a pair of boots that I stared right at and still didn't see them. i know this because I came back later to see them right where I had looked. I finally found a croc, my friend already out the door praying I was going to go insane because of a pair of crocs.
     I stomp of the stairs with my fat feet because I always doing everything hard and never lightly. I walk into my and yes, there is the other croc. You might be asking me why they were on two different floors in my house and fortunately for me, I don't have to blame myself for once. My organization was perfectly fine. The blame? My cats!!! Yes, my cats like to "hunt".
     I walked into work the next day and of course people had to ask me what the heck happened to my shoes. I replied that it was my cat. The answer I got back was, "I shoot the damn cat if I were you", understanding that this was coming from the most sarcastic crazy cat lady I knew, I kind of had to chuckle.
     Needless to say, next time it rains, I better know where my boots are or keep my crocs dry!!!

There is a Season

     As the saying goes, there is a season for everything and there is time of change. I feel like I can relate to this statement on so many levels right now. I am going through some large transitions once again and realizing that as I get older things change. Things come into your life and things leave. The same goes for people. Transition has always been difficult for me, but I think relationship transitions are the hardest.
     Two years ago I was signed up for Big Brothers Big Sisters. I was desperate for a social outlet and friends. I was suffering in a little bit of isolation and I needed to get out. Within two months of applying to the program, I was assigned a big sister. Unfortunately that match ended do to uncontrollable circumstances, but I was assigned a new big sister. I was a bit nervous, but I knew everything would be okay.
     It was originally debated as to whether I would still receive services after I lost my first big sister. I was transition to my schools program for kids 18-21 and would no longer be going to school at the high school, but on a college campus. I wouldn't have received my diploma yet so they approved and I moved on. Last summer my services ended, but my Big and I have made a huge effort to hang out. It may not be once a week, but its every month or couple months. I can count on her to be there though. Things are going to change soon though.
     I'm going off to college next year and I just found out my big sister is moving at the end of the school year. She just got engaged and she is moving far away. I worry about staying connected with her, but I know it will all be okay. We just had breakfast today and I know she will return. I was kind of whiny about it this morning, but then my mom pointed out that I'd be moving in the fall anyway.
     Along with this I have other friends that I feel like I am losing touch with. I probably have to give you some background knowledge first though. Relationships have always been different for me. If someone is nice to me, I automatically consider them my BEST friend and think I need to invite them to every event I have, most specifically my fourth of July party, but sometimes my birthday parties and other events. I'm not sure why, but they could be sixty and I would care, they were still family friends then. One time I felt like my receptionist was my best friend at my dr.s office. When these people leave, it really makes my heart ache and its a hard transition for me.
     Fortunately I have time with my big sister, but another friend of mine is slowly leaving my life. Its not that they don't care, but our lives just get so busy. I rank people as important in my life more strongly than most people (refer to above). We email back and forth and occasionally have lunch or dinner out together. Things have just been busy for us both and new things have come up. For one, this person now has a child and for another, I have school on the days they are off. Lastly, we both love to travel.
     Sometimes I just don't understand why people fade away. I know its okay and I know I'll be fine, but sometimes its hard. Its kind of funny, not humorous, but weird. I have this serious issue with people moving or leaving me, but when it comes to death, I am the last one to cry. I am not emotionally attached to people the same way. I am not able to look at the full set of circumstances and their family. I look at the person in my head and think, thank god there no longer in pain. There in heaven where they belong and I get on with it. Its something to talk about and empathize with, but then get on. I'm not an apathetic person. Don't get me wrong, but I am more upset if someone gets hurt because its something i can visibly see the pain of. I have never been to a funeral and I don't think I am emotionally ready to either though.
     Now this being said, I have never had people that I am extremely close to pass away nor have I been to the funeral. I have had a great friend of mine pass away, but she was gravely ill and I only saw her once a year. I have had relatives die, but I only saw them a couple times a year and I was  young. My grandfather was a bit different though. I got somewhat emotional over him. When I though about him, I looked to the sky. He was a strong Catholic and one year we even got him vatican socks. I didn't have a deep connection with him, but he was a church goer and he was my family. I miss the fact that he used to love giving me hugs. I love how he always put up with us telling him we weren't his grandchildren because he was our step-grandfather. That was when I was younger and it hurt a bit, but he understood and he forgave us.
     I just don't get why I am so apathetic towards death, but if the person is there, they have to be there. Maybe if there gone, I know I don't have a choice to see them again. I don't know. I haven't been to my grandparents house since my grandfather died. My grandmother comes to visit us all the time now though. I almost wonder if it would strike more if I stepped foot in my grandparents house and saw no grandpa or 'papa" as I called him. This is just tough stuff to think over and I think I need to look at bigger pictures and schemes of things in my life.
     Its a miracle, we have facebook now where we connect with anyone and we have email. I guess love for me is more physical than mentally. Some of it may be my point of view or lack of theory of mind and my opinions. I need to look at everything and understand hat it happens for a reason. My reaction doesn't matter. If its negative, then thats my problem and if its positive and I am able to look at the brighter side of anything, then I will be a lot happier. Not only is there a season, but there is a reason for social interactions.

Okay, not quite back to square one...

     But I just had another break through seizure last night and I am not happy about it at all. I was diagnosed with epilepsy when I was three and I was put on medicine. It was normal and I never really knew I was having a seizure when I would have them. I was never coherent enough to know anything. I only remember two seizures, one of which was on the way to the hospital where I knew I would be okay and another one was small and I knew I would be okay. Now that I am older and re-diagnosed during a time where I know what big seizures really due to you, I am scared.
     I posted a while back, farther back then my second epilepsy diagnosis about an anxiety attack I had when I went to see temple grandin. That episode was the type I had in July too that they called a seizure. When I wrote that post, I talked about how I would manage these episodes at school because sometimes I cry. I don't care how old I am, if something is scary, I will react. Questions are coming to my head again as I once face that same concern. I don't want to scare my roommates.
      I am stuck as to what to do. We are trying to get me a private room when I move off to college, but that is still in the works. If I have my own room I can cry all I want and call my mom, but I also risk having a grand mal seizure with no one present to call 911 or assist me. If I have a roommate I would have to decide whether to tell them about my seizures or not. If I told them I would have to think about how they would react. It could very possibly push them away because its weird or it could scare them, but once again I have them there. If I had roommates that were aware, I don't know how understanding they would be of the emotional component when I cry or need to call my mother for support. Last night I hollered for my mom who was just down the hall to come and snuggle with me and comfort me. When I go to college, I'll have to be a big girl and I know I can do it, but a phone call might help.
       When I have my episodes, I always think they are so awful and then a couple days later I feel like what ever. I am once again reminded several months later how agonizing they are. My legs start to shake and then jerk as I walk like a robot or an ostrich, then it moves up my torso and eventually makes it difficult to breathe because you need muscle control to breath and you don't have a whole lot. You proceed to ride the seizure out, only to worry that it will happen again or maybe even worse.
     There are so many things to think about. I'm not letting anything ruin my plans and dreams, but sometimes circumstances make you think a little bit. I think its kind of cool to figure out your morale dilemma's even though there tough because in the end, you feel good about it. I thought I would be done grieving over the diagnosis of last summer, but when a seizure strikes again, the emotional rollercoaster starts again. With all hope and positive thinking this grievance will go away soon. I am God's masterpiece and he has plans for me even if those plans require me to make some hard choices and some scary paths. :)