Pain

     I started Physical Therapy (PT) on Monday for chronic neck and back pain that hasn't gone away since I stopped wearing my backpack. As I explained to my mother how excited I was to feel better, she reminded me to thoroughly answer the questions that the Physical Therapist asked. I thought to myself about how easy that was and that it couldn't be too difficult. When I finally met with PT, I realized just how hard those questions were to answer and just how subjective pain is.
     During my time in OT school, the therapists that shadowed would always ask their patients what their level of pain was on a scale of 1-10. A lot of the time patients would say that their pain was somewhere between 7-9. I truly couldn't imagine how much paint these individuals were in. It scared me to age. I also couldn't ever understand how they could even gauge that.
      Fast forward to Monday where I was asked similar questions. The first questions was, "where is your pain"? Well of course the paint is in my neck, shoulder, and back. If I had to give a rough estimate, I would say the upper left quadrant of my back. That question was easy.
      Then came the questions about my pain level. "On a scale of 1-10, how bad is your pain?" I thought to myself and shared with my therapist that it was probably about a 1 or 2. I thought the questions were done. Then she asked, "On a scale of 1-10, how bad has the pain been at its worst"? I took a minute to think again and then I told her it was probably a 3-4, maybe 2-3. To be perfectly honest, I was scared was scared to answer too low for fear of her thinking that nothing was wrong and I was scared to answer too high for fear that I was being too dramatic. The pain is chronic and bothersome, but it doesn't effect my ability to function. Isn't that enough? She assured me these questions purely for insurance purposes and I totally understood the need to answer them, but what came next through me for a loop.
      After asking various questions about my pain level, then she started to go more in depth. How long have I had this pain? I don't know. It started when I was in college. Well, was it a year ago? 5 years ago? I settled with somewhere around 3 years ago; it wasn't like there was an exact day where I woke up and was in excruciating pain. Then the toughest question of all came. Is the pain a sharp pain? Is the pain an ache? I had no idea how to even begin to answer this question. Isn't pain, just pain? "Well, it sure isn't some dull ache like a pulled muscle, but it sure isn't sharp like someone just stabbed me either" Can't my body just hurt? Then I told her how certain things feel like they were following asleep such as my pinky finger. I also expressed a "burning sensation on my back. She proceeded with he questions, "well is your finger numb?" I told her that it was. Then she asked, "Or is it tingling"? Wait, don't numbness and tingling go hand in hand? What does tingling even mean?
      I never thought their could be so many questions about something I thought was so simple. Answering questions and rating something have never been something that I have been good at. From past experience, breaking a finger rates as a 10 on a scale from 1-10, yet people say that child birth is like breaking 20 bones. What's the difference between numbness and tingling? If you push on something, I'm sure you'll be able to tell if your causing me great pain, purely by the amount of sound that is coming out of my mouth. What do you mean a sharp pain? I mean, I get migraines regularly that start out as a headACHE and then the pain eventually gets sharpER. All I could say is that I was sore. Pain in not a concrete thing and this Aspie doesn't understand things that are not concrete. You may be able to use words asking whether something is this or that, but what if it is neither? What if it just is?

Dear Matt

      I stepped off the elevator and made a sharp right, about to exit the building and head to work. One hundred feet in front of me there was the blurred vision of a man, about 5 foot with a very round face. In the distance, the face looked so familiar, but my mind could not wrap itself around who this “stranger” was. As I tiptoed myself closer, I was able to make out the light brown hair on the sides of his head and the little goatee. “Matt”, I thought to myself, “that isn’t Matt, for this man looks a bit harrier”. I took another ten steps forward as my jaw dropped to the floor. “Oh my God, I don’t know what to say, oh my God”, I shouted as I embraced him arms stretched wide. There was nothing to say; Matt was here, standing right in front of me.

            As the echoes of my shouting made its way through the hall, doors opened and people peaked to see what had just happened. Is she upset? Is everyone okay? Matt, although not working at the time, went into action and quickly moved me to a quieter, less chaotic room. “It’s okay, I’m just stopping through on my way to see my father”, he said. He was quick to assure me that everything was okay and he knew just what to do: distract me, talk to me. Due to the shock of this unfolding situation, there is so much that I feel that I didn’t get to say. When you don’t see or talk to someone who means so much to you, there is a lot to catch up on.

Dear Matt,

       This is a sweet note to you of all the cool stuff that I wish I had told you in that moment I had with you:

·      I’m not only graduating, but I’m graduating with my Bachelor’s degree

·      My brother is doing phenomenal and my mother is healthier than she has been since I was in high school.
·      Eileen graduated in 2016 and is graduating from Salisbury University with her Master’s in May
·      Cathy is the new you. She has your directness, but Amie has your sense of humor. I never imagined being able to find someone who could fill your shoes, but the two of them together do a pretty good job. It’s not that your not awesome, its that I want you to know that I am well cared for and I continue to have the great supports that you gave me while you lived hear. I want you to be able to have a sense of peace knowing I am in good hands.
·      Oh, did I mention that everyone has to come into work at 8 am now? No more sleeping in until 10am
·      As I headed off to work, I forgot to let you know that I got a job with student activities shortly after you left. Sara hooked me up after not getting the Ambassador position as you had suggested.
·      Now I have a table in my common area just for my puzzles. P.S. I’ll never forget when you liked to come up and flip my pieces over, just to annoy me.
·      Benjamin Plum Farm turned into the Acres Project and now we have a house!!! I might even live there.
·      Lastly, I miss you and as Eileen taught me, it’s not goodbye, it’s see you later!

Two Years and Many Life Lessons

     Social skills have never come easy to me, but over the past two years I have been fortunate enough to be surrounded by wise people who have taught me some of the most important lessons regarding social interactions and emotional coping. Last year I lived with an amazing Resident Assistant who taught me multiple lessons and this year I was blessed to have a Resident Coordinator who was wise beyond her years.
     Last year, I was placed in the same pod as an extremely talented and gifted RA named Eileen. Within our wing and floor of the building, there were four other individuals who just so happened to be on the Autism Spectrum. this made for some difficult situations and a lot of intense emotions. What made the situation more complicated was that I lived right across the hall from the individual who I was mentoring through the Office of Disability Services.
     Due to the intense emotions and multiple meltdowns between us, there were a lot of lessons to be learned and Eileen was our leader as we worked through these tough situations. Often times, when there was a rule broken or someone else was upset, I would begin to intervene or get extremely worked up myself. After watching how Eileen would interact with these individuals and myself, I gained a lot of insight. One of the most valuable lessons was taught to me when my mentee would become extremely impulsive or would act out and I immediately wanted to do something about it. Eileen showed me that sometimes others have to work through those situations themselves and those who are on outside should only intervene if someone was in danger or trouble.
     The second thing she taught me was to be quiet and think before I spoke. She was an amazing role model with very few words. It's not that she couldn't speak, but she was able to get her message across with out explaining everything. She taught me that some of the most powerful messages or conversations are conveyed with very few words. This has allowed me to think more before I speak and "dabble" in conversations instead of taking a whole conversation over.
      While Eileen taught me a lot of lessons, my Resident Coordinator taught me some invaluable lessons as well. Given the extreme need to help everyone or "fix" everyone up when they were upset, I would constantly be observing others emotions. One day, as I was sitting in the Residence Life office, my Coordinator Cathy walked in. I could tell that she was stressed, which automatically made me start to worry. I questioned if she was okay and she said something about being tired or stressed. I expressed to her that sometimes I just expect everyone to be happy and I don't like seeing people upset. With this, she made one of the most profound statements I have ever heard. "If you don't have a rough day sometimes, you won't be able to enjoy the good days". This taught to live more in the moment and enjoy the happiness and work through the tougher emotions.
     Later on during the year, I was talking with my coordinator and I had asked her something about what her siblings did for a living. She told me she had no idea, she never asked and didn't really care to know. Originally one would expect that to be a pretty strong statement, but she is the only one in her family who had gone to college. She doesn't worry about others because she worries about herself and what makes her happy. That small statement about how she didn't care what her siblings did for a living, showed me that I can't feed off of what others are feeling or what others are going through. I can care about others, but that doesn't mean I have to feel what they are going through. I need to take care of myself and do what makes me happy before I worry about others. If I have room to worry about others, then I can.
     These last two years have taught me so much about myself and the world around me. I can't wait to see what the next two years have in store.

Socialize With Your Peers They Said

     It shouldn't be a surprise to anyone that I have struggled to socially interact with my peers, my whole life. I can remember back to fifth grade when I would walk around at recess talking to my homeroom teacher Mr. Benson. I don't really remember particulars of our conversations except for the one time when I was talking about the myriad of medical issues/special needs I had and I stated that I have a lot of trouble with my eyes. He told me that he was as blind as a bat and all I could think about was whether or not he had trouble finding his glasses in the morning because he couldn't see anything. As you can tell, I'm quite a literal thinker.
     In middle school I would attempt to play on the playground with my peers, but most of the time it would end in arguments or me thinking that someone was mean to me. When we'd go to the psychologist during seventh grade to figure out the exact disability I had, I remember all the questionnaires my mother and I had to fill out. A lot of them asked if I was ever bullied and my mom would put down that I was quite frequently bullied. I wondered why my mom kept saying I was being bullied. I just knew what he nice kids were and who the mean kids were. There were just some kids I didn't get along with. What I didn't realize was that those mean kids were bullies.
     As I continued through middle school, I would start to walk around the circular path on the playground talking with teachers. They would try and make small talk with me which I just didn't get. They were bound to fix me so that I interact and socialize with my peers. They wanted me to get along with my peers despite the face that I was years ahead of them in some areas and years behind them in other areas.
     When I arrived in high school, my family physician referred me to a psychologist who promptly diagnosed me with an anxiety disorder and referred me to a wonderful school psychologist who he aptly described as an Autism specialist that was new to our area. Once the new school psychologist Dr. Hunter got to know me, she really reinforced these ideas these ideas that I needed to develop peer relationships and stressed the importance that nothing should limit me. She was also the one that gave my parents hope that I would make it to college and where I am today.
     All throughout high school Dr. Hunter stressed the importance of building these peer relationships. My parents jumped not he band wagon then too. They continuously encouraged me to make friends. At one point it came to the fact that I just needed to stop talking about my disability. At that point, I was too far gone and I was determined to teach others about my condition.
     As high school continued, the encouragement persisted as well. When I was in eleventh grade, I joined a transition class and started working on some seriously independent living skills. During this period of time, my peer relationships started to flourish some more. The problem was that everyone wanted me to be typical and make typical peers. All the friends I was making had special needs as well. Most had disabilities that were much more severe than mine. I kept insisting that I was making friends, but my family wanted me to be making typically developing friends as well. It just didn't happen.
     Here I am now, at 1:45 in the morning during my senior year of college. I am 23 and currently living in a building with a bunch of college Freshman. You do the math. As I sit here and reflect, I keep reinforcing myself that I can't keep socializing with the adults on the college campus. I have become relatively close with the Residence Life staff here and they have greatly contributed to my success. The one staff member has volunteered to assist me in developing some more independent living skills as I work on moving towards graduating and living independently.
      I sit here at 23 years of age, trying to figure out who the heck I'm supposed to socialize with. My Resident Coordinator is 24, one year older than I am. The students I'm living with are 18. I'm forced into this position of having to socialize with my peers, these 18 year olds who I live amongst. Really, are they my peers though, or are these staff members I work with on a daily basis my peers. I want so badly to just be friends with my Residence Hall Coordinator, but that's not professional on her part. Although it's not professional on her part, is it really fair on my part? Who are my peers? Who am I supposed to socialize with? As my mom says, I'm an adult now, it's okay to socialize with adults. It's okay to socialize with adults, but what if you have the maturity of the adults in your life, but your at a different part of your life.
     All the girls around me are all about parties and doing there homework last minute. I'm all about working on puzzles, scrapbooking, taking hikes, having real conversations about real things, not boys. Although boys are nice, I'm about living my life to the fullest and following God's path for me. I'm about being me, not about figuring out so much who I am any more.

Fighting Tornadoes

   After a long day of dr. appt.'s for my mother on Tuesday, my parents decided to stop by and visit me at school before they headed home. We enjoyed a nice late lunch/dinner together at my favorite restaurant, Kimball's and then headed out to Walmart to grab some last minute items that I needed for my dorm and my classes. Our visit with each other concluded with the always popular trip to Eder's, our favorite ice cream place.

     Prior to leaving Kimball's it began to rain pretty hard. We waited inside until the rain subsided enough for me to make it to the car. For those of you who don't know, I can't stand the feeling of rain on my skin. It's one of the various sensory issues that I have because of the Asperger's Syndrome. Typically when  sound bothers me, it hurts my ears, but when a tactile feeling irritates me, my shoulders and arms begin to hurt. I try to avoid this at all cost. 

     As we left Kimball's in our car, it was evident that a huge storm had just passed as the sky was extremely dark. While we made our journey to Walmart and eventually Eder's, I repetitively checked the weather and asked my father if we were heading towards the storm or away from the storm. He continued to reassure me that we were not going in the same direction as the storm. Despite this reassurance from my father, I continued to be on edge until we got to Walmart. I kindly asked my father to let me and my mother out at the front door so that I could avoid the rain. He's a good daddy. 

     As we pulled up to the front door, it was in question as to whether the store was even open. We saw lights on inside, which meant the power wasn't out. On the other hand, the automatic doors were not working and there was a line to get in the store. With hesitation, my mother and I stepped out of the car and proceeded to enter the store. As we entered the store we were educated about the current tornado warning for the area and that we must head to the toy section as there would be absolutely no shopping at this time. Who doesn't want to goof off in the toy section of Walmart? 

     My mother and I entered Walmart and we were fortunate enough to have our cell phones with us. We called my father to let him know what was going on because he was obviously going to be curious as to why there was limited access to the store as well. We told him there was a tornado warning and to head in and go back to the toy section. My father told us that we should get out to the car and we would go somewhere else for the supplies. My parents live and hour and a half from school and they really needed to get home. 

     My father pulled up to the from of Walmart and we got in. As we left the Walmart parking lot my mother picked up not he fact that I was beginning to stim. She asked me if I wanted Eder's ice cream after all. All I could get out of my mouth was that I was sorry that I was stemming and there wasn't really any other option for us at that point. I also pointed out that I liked Eder's as I continued to apologize. My mother abruptly corrected my behavior by letting me know it was okay, but that she didn't need to hear about it. 

     By the time we got to Eder's and ate our yummy ice cream, the storms had passed. We decided we would head back to Walmart to grab the things we needed. As we were walking through Walmart I let my mother know what exactly I needed/wanted. As I expressed my wants and needs, my mother told me to stop talking like a baby. To this comment, I wasn't completely shocked, but I was surprised. I told her that I couldn't help, I wasn't talking like a baby, and that my brain was under a lot of stress. 

     If you have taken any Psychology or health classes, you would have learned about the fight or flight response. Typically my response is more of a flight response with the wonderful added meltdown. Since there wasn't room to flee, burn of energy or throw myself into this meltdown, it came out as swimming and baby talking. I wasn't crying and I was proud of myself. As far as I could tell, I was keeping my shit together. Unfortunately, the brain can only handle so much stress before it starts to shut down. In this particular case, my brain was essentially shutting down on me. 

     When my mother told me that I was talking like a baby, I was really offended because I was aware of what I was doing and it did sound weird, but I couldn't help it. At that moment I was feeling Autistic (refer to blog post titled, I Feel Autistic). When I feel Autistic, I kind of zone out. I don't mind listening to other people, but I don't want to talk, myself. It's not that talking is painful, but it just feels uncomfortable and like it's not the right thing to do. If I really wanted to interact like a typical person during these times, I probably could, but it may cause me to go into meltdown mode because there is too much effort for what typically comes natural when you brain is in this shut down mode.

     Most of you are probably wondering what my mother meant when she said that I was talking like a baby. What essentially happened was that my brain was only able to produce the bare minimum that it needed to, to get my point across. For example, instead of saying, "I really like that binder with the puppies on it", I would say point and say, "that want, I like doggies". We also had to do some grocery shopping so as we walked through the aisles, instead of saying, "I need Poptarts", I would say, "portraits". I give the most minimal answer I would give in with a flat affect because it didn't take effort and was less stress on my brain. Now typically I have no problem with affect and it comes naturally, but when part of your brain is shut down like that it's different.

     After explaining all of this to my mother, I just wanted something to calm me down. I needed a reboot. It felt really uncomfortable. My head didn't want to think and my hurt. I just wanted a hug, a weighted blanket, or to even just zone out, but I couldn't in the middle of Walmart. Fortunately, when we got back to my dorm, I was able to calm down under my weighted blanket as I watched tv and relaxed. By the evening I was ready to have fun again with friends. Granted, I took a two hour evening nap, but that nap gave my brain the reboot it needed. 

5 hours of friendship

     As I sat in my fathers recliner relaxing for the night, I began to right a Facebook post using the "Feeling" option that Facebook lets you choose. Do you know what I'm talking about? There's one for feeling, watching, reading and the list goes on. As I bunched in "Feeling" into my status updated, I began to type in the search menu "Defeated" because quite honestly I was feeling quite defeated at the moment. I was about to write one of those whiny Facebook status' where I complain about all of my life problems from the day and then end it with some sappy comment remember those who were killed in Orlando, just to make it sound like I cared about something. In all honesty, I do care about others and I think that status I was going to right was to remind myself that things could be so much worse. 

      Shortly after typing in the status, I read it over and realized that there was no way I was going to post that to Facebook at such a sensitive time. There was no way I could complain to such a wide audience when there was and still is so much pain in this world. It just didn't feel right and trust me I do feel bad for those that were lost, those that are suffering, and all the loved ones who may be affected from this tragedy. 

     I looked back on my day and I realized how truly great my day really was. Yes, there were parts that sucked from sun up to sun down: a migraine to start the morning, a potentially great interview that went horribly wrong, battling a cold and allergies on top of everything else and not mention that my world is probably going to be flipped upside down tomorrow, but that's another story for another day. 

     On the other hand, some really great things happened today and I think we need to focus on those. My mother always taught me that someone always has it worse than us. I truly do believe that. The other day we ran into a friend at the grocery store that was telling us that sometimes we really need to just feel things and that maybe things aren't worse for others. I have to say I disagree. I think it is important to feel your emotions and then look at the grand scheme of things. 

     Today was a great day. As I stood outside the facility where I interviewed I made a few phone calls. One was to an acquaintance/friend who I knew from a  previous place of employment, one was my mother to tell her how awful the interview went and the other was to let someone know that I had the interview and that I didn't think things would work out or that the outcome was not what the two of us had expected. My mom pulled up with Excedrin in hand as I talked to my friend on the phone about getting together. We decided that instead of having my friend pick me up from the interview my mother would drive me to a near by park. this was at about 10 or 10:30 this morning. We didn't leave each other until 3:30 or 4. 

     5 hours! 5 hours of socializing something without becoming emotionally and socially fatigued. 5 hours of conversations, giggling, and bursting out in song. I literally thought we were going to chill for a bit, go out to eat and then part our ways so I could go into work to get some stuff done. I called my boss/teacher to tell her I was grabbing a bite to eat and I'd be in and she conveniently had to leave at 1 instead of 2:30. I was supposed to work for two hours and it was already noon. We decided we would sit down somewhere nice to eat instead of grabbing fast-food. This turned into hours more of fun. 

     During our time together we sat by the creek at the park, grabbed McDonald's sweet teas, visited my cats at home, ate lunch, played mini golf, visited a local ice cream place where we used to work, and we went goodwill shopping. I would have to say that I think this is friend that I hung out with today was a true friend. My mother has always talked to me about acquaintances, friends and best friends. I'm pretty sure Amber will go down in the book as my first true friend. This was the first time I wasn't with someone else who had a disability for a long period of time. This was the first time I hung out with someone without telling them to go away or that it was time to leave because I was tired. After five horus of my my friend called the shots. I felt typical. For the first time in my life I felt like I had a typical interaction with a friend, a typical friendship. 

Reflection on World Autism Awareness Day!

As I settle down for the evening I reflect on the events that today has brought. Today was World Autism Awareness Day. I have very conflicting thoughts on this day. Today, I was on the streets handing out bracelets to light it up blue for autism, which in turn helps support Autism Speaks. Autism Speaks created the campaign that allowed World Autism Awareness Day to exist. Do I believe in everything that happens with Autism Speaks? No. Do I support Autism Speaks? Well, I'd like to say that I don't, but when there is not other organization that promotes the awareness and acceptance of Autism that will reach a large public audience, I have no other choice but to "partner with them.

Being an Autistic individual, it truly hurts have an organization that believes that we can't speak for ourselves. Granted, there are some people that can't speak for themselves, but an individual with Asperger's is going to be able to explain Autism a heck of a lot better than someone who is neurotypical. If one does not live the life, how can one know what we want and need?


Today I lit it up blue, not for Autism Speaks, but for The ACRES Project, which is something near and dear to my heart. We have a voice and ACRES is listening.