Dickinson Mental Health Charity Ball

Sunday, November 25, 2012

emergency room visit



It was a late July day and I was wrapping up my time at a Transition conference. I had just given a speech about disability awareness and went to sit down and listen to others presentations before we had to say good bye. 




When I sat down, I got prepared to listen to the next presentation. As I sat there and listened, I started thinking about other stuff that was on my mind. I wasn't fully tuned into the presentation like i was supposed to be. I remember sitting there and almost starting to day dream or go into deep thought. It was a deep thought that I couldn't get out of and it scared me. 


As soon as I noticed something was wrong, I got up and walked across the room to a young woman in a  bright orange sweatshirt. Unbeknownst to me, I told this woman that I was having an anxiety attack and that I needed to take a walk. She got up and took me for a walk to help calm me down since I was really confused. I didn't know where I was or what I was doing. 


When the girl in the orange sweatshirt took me on a walk, we ran into a family friend of mine. Her name was Cindy. Cindy recognized that I was having trouble and came to help me. I also told her that I thought I was having an anxiety attack. Cindy tried to calm me down to no avail. She decided it would be a good idea to call my mom to come get me early. It wouldn't hurt to get me early since there were only 15 minutes left to the conference. 

We finally got a hold of my mom and let her know what had happened. She said that she would be right there since she was only a five minute drive away. She rushed in and got me to take me home so I could relax



When my mom picked me up from the conference, she had planned on taking me to Honeybaked ham, one of my favorite fast food restaurants for lunch. When she found out I had the episode, she decided she would still see if I wanted to go. I decided I wanted to go because I thought it would cheer me up and get my mind off of what just happened. I thought it would distract me. 





When we got home from Honeybaked Ham, my mom called the doctor to document what happened and to see if she should do anything. The doctor told my mom that I had to go to the emergency room. I posted on facebook that I was headed there and I asked for prayers. 


Jordan Stephenson
July 27
going to the ER right now!!! Prayers please, more later!!! :(




When I posted on facebook that I need prayers, my friend Michelle who came in from out of town out saw it. It just so happened that she was coming up to visit us later that evening. When she saw this she was shocked that I was in the emergency room and asked if we still wanted her company. Without a doubt we said yes. She came up to our house later and waited for us to come home.



When my mom and I were in the waiting room of the emergency department, we were told by the nurses that I had to have a fall risk bracelet on in case I had another seizure  I knew I wasn't going to have another one of these seizures again, because I have had them several times before. I never have more than one in a row. This was the first time my doctor wanted me to see an emergency room doctor. They told me it was just precautionary. 



When we arrived  home from the emergency room, we brought a pizza home for dinner too. It was really yummy since I hadn't had food since lunch time. It was 8:30 by the time we got home.



I had to be sleep deprived for a diagnostic test so my friend Emma invited me over to her place to make Christmas cookies and hang out so my parents could get some sleep. Every year since we were young children, our families would get together for Christmas Eve. We have dinner, decorate cookies and exchange gifts. Emma had been in France the previous Christmas and she wanted to make up for the cookie decorating we missed.





When I had my follow up appointment with my neurologist to go over the results of the diagnostic testing, he told me that it was more likely than not that I had epilepsy. He suggested I get a medical alert bracelet so I can be more independent on campus. He was worried that I would have a seizure in class or while I was crossing a road


 Another thing we had discussed with the neurologist was my ability to drive. He told me that as long as I was on medicine and didn't have a seizure for at least six months, he would let me drive. My dad makes signs and decided to make these magnets to put on the back of our car. He thought it would help us stay safe




Our friends that had visited the same weekend I had the seizure could tell I wasn't myself. I was really tired. I also had some problems with my speech and memory that have now resolved themselves. They were part of the post-ictal state of my seizure. This means that it was the side affects I get after a seizure that make you feel yucky. Since my friend saw this she decided to sent me a get well soon card a couple days later. It made me feel really happy during this really rough time







Friday, November 23, 2012

Defining Typical

     I always grew up wanting to be "neurotypical".  What does that mean though? Well I thought it meant being normal, being just like everyone else. There is no such thing as being like everyone else though because no one is normal. I always like to use the terms typical and neurotypical, but the fact is they don't really mean anything nor do they matter. What matters is being unique and interesting as opposed to being boring.
       Today I went to work just like any other day. I had a break for lunch where instead of eating in the break room, I ate out in the store because I didn't want to listen to a bunch of coworkers cutting dry ice in the back. I sat there eating a yummy bowl of macaroni and cheese as I scrolled through my texts. One of the texts was asking me what I wanted to do today. I sat there for a minute and thought about what I wanted to do. I couldn't think of anything in particular so I sent a message back letting them know. I sat back and took another bite, thinking about what I had just done. I had just made several huge accomplishments just by sending one text message.
     You may think that is not a huge deal, but it really is. First of all I always insist on talking to people on the phone because of the complications I have relating to expressive language due to my aspergers. Sometimes its a lot easier to express my self and get my point across by verbalizing what I want to say as opposed to written communication. On the other hand sometimes I can express more through my blog than I can at any given time to my parents. Fancy That!!! This was a huge step using texting as a form of social communication as opposed to the typical communication of important details or questions and answers. For instance if someone texts me "hey whats up", chances are that I am not going to reply simply because I absolutely hate texting, but today was different.
     I sat there thinking about how typical I was to be chilling there just texting friends. I felt cool and typical (whatever that means).  I felt like I was normal, but there is no such thing as normal, there is only such thing as conforming to your societies expectations. Not everyone goes walking around town with a blue afro do they? (some people do and that doesn't conform to standards.) That doesn't mean they have aspergers, but since I am repetitive and have trouble with friends I am not typical. (May I also add this was actually a specific example I saw in my community).
     I proceed to think that this isn't only social texting, but I am setting up plans to hang out with a friend. Not just a friend, but someone I can call a close friend. Its no 10:30 at night and I have been hanging out with her since 4 today. We are sitting in my family room watching television together with my parents. It came so natural to me. We just started texting and decided to hang out. We had already talked about it last week too which amazes me even more. I have lost count the number of times my parents and therapist have told me that if I want to hang out with friends, I need to plan a couple days in advance compared to when I was little and able to call someone and play all in the same day. there was no searching, my friend was there.
     I remember a couple therapy sessions, probably when I was in middle school that we discussed who were my friends and who were my acquaintances. We talked about the fact that just because I knew someone my whole life or just be they loved me didn't mean they were my best friend. it took much more. It took two people talking on regular basis to become best friends, but it was okay to just have friends.
     My mom would always reassure me that I would have a real friend one day, but I'm not sure I believed her. I didn't really understand the concept to begin with. I would compare friends to this scenario but none of them would add up to real friends. I had just about given up until this year. I can officially say I have a real friend now. We text most days and we hang out at least once a week. We will sit in my kitchen for hours just laughing. Every wednesday my friend picks me up from work and takes me home where we have dinner and watch television with each other. Sometimes we do a craft and sometimes we play a game. This is a friend that is part of my family now. She feel at home at my house.
      I don't have to worry about going up stairs and taking a shower when she is over. She doesn't have to worry about being served ever piece of food and every drink. She can walk into my kitchen and eat a snack we have sitting around without being judged. I don't have to worry when I am with her. We are living human beings and we all make mistakes. Tonight we went out for dinner and I paid for dinner for the family and my friend paid for dessert. We are always there for each other and she is someone who we all family. Heck she weathered the Sandy out at our house.
     I never thought that I was this typical if that is even a way to define typical. Just because I have some sill label doesn't mean I have a life sentence. I can be happy, I can have friends. I can have best friends and much more.
     There was a little boy I knew about named Nickolas. He had a fatal condition called anencephaly. He wasn't supposed to live but he did. I have to live every day by using the phrase, "If I say I can do something, I can do it", because guess what, Nickolas did it 3.5 almost 4 years. If nickolas can overcome obstacles such as life, I can overcome obstacles and defy odds and make friends. If you want to say I am an unhappy not typical human being that functions in society, so be it, but I am a strong and happy aspie who is achieving more and more everyday.
     Every year my family goes around and say what each of us our thankful for. This year I expressed how thankful for how independent I was. My mother was told when I was little, that I would live in a group home when I grew up and that I would never be able to live on my own. Guess what peeps, I am going to college, getting decent grades and having some days lasting 13 hours with out needing my parents for anything. Take that!!!

Thursday, November 22, 2012

Thankfulness

I'm trying something new today. I am going to write what I am thankful for. It is the month of thanks and giving isn't it?

1. I am thankful for my family. They come first and foremost ahead of everything else. My parents have been there to support me through every step of my life. They have supported me in the decisions/choices I have made and they have helped over come the obstacles I have face in my life. I have to give thanks to them because I wouldn't be who I am if it weren't for them.

2. I am thankful for Melissa and Dickinson Mental Health. I wouldn't have come as far as I have it it weren't for them. If it meant driving long distance to see the specialists I needed to see to get this far in my life with success, I wouldn't have it any other way. I thank you guys for not only providing services, but reaching out to satellite offices where you can see more clients. I thank you for holding a charity ball that raises money for autism awareness and more services. I thank you for the invitation to the charity ball this year where I was able to share my success. I thank you for supporting my blogging experience and letting me share and advocate for others. I thank  you for letting me instill in others that people on the spectrum can be happy.

3. I am thankful for camp chameleon. Camp chameleon was there for me for 10 years. I will never forget the day when I met my neurologist Dr. Famiglio for the first time. She introduced me to camp and I went until I was to old. I am fortunate enough to give back to those who helped me so much. I am thankful for the experiences you have given me to just be a kid. The experiences you have given me to be in nature. The experiences to be exposed to others with special needs. The experiences that have helped me build my foundation to help others as an adult. You did so much for me. I remember the carnival, and the dog show my first year. I remember the bug treasure hunt in the med shed my second year. I remember making soda/mentos rockets one year. I remember climbing the rock wall for the first time. I remember going down the zipline the first time. I remember the movies we made. I remember when cat in the hat visited my cabin. I remember elmer fud. I remember the gigantic alien that came visited us. I remember the hay rides and the sheriff's house. I remember KJ the guitar lady. I still love her. I remember king joe. I remember the pudding contests. I remember my first time in the tree house. I remember play the drums with K. I remember trick-or treating and J chasing after my rabbit tale. I remember the J trio. I remember the aster egg hunt, the thanksgiving dinner and the unbirthday. I remember when Santa came to visit. I love you all and can't thank you enough.

4. I want to thank big brothers, bit sisters. I will never forget the day my mother called you out of urgency. It was during a time I was struggling. You told us that the wait wouldn't be long. I remember having my intake and thinking how fortunate I was to be able to have a big sister. I remember meeting my big sister. I remember asking if I could have been matched by my birthday. I remember having that wish come true. I remember the great activities I did with my bigs. I remember the picnics. I remember the day we got to meet the women's basketball team. I remember our girls groups. I remember the positive and caring situations I was always placed in with you guys.

5. I want to thank Melissa that has been there all the way for me. Melissa you stepped into my life at just t he right time. I was just starting high school and we didn't know what we were getting into. You were there and you understood me. You understood my family and you understood what we needed. You understood that I was unique and that you could still help me. You were able to give me practical strategies. You were there when you had to leave, to guide us in the right direction. You were there when we didn't want to start traveling. You were there when we decided we wanted to travel. You were there to suggest I start writing a blog. You were there to encourage me through rough times. You were there with your spirits high when I was struggling with driving. You were there.

6. I am thankful for sunny days and there understanding of me. To be blunt and honest, I would probably be fired from any other job if I gave them the crap I give you guys. You were there when I was growing and learning how to deal with people. You pushed me when Iw as stubborn. You were there when you knew things weren't right. You are there to be an advocate and teacher for me. You are there to help me do better. You have a connection with my mom like no other.

7. The creamery is always there for me as a peer oriented job. I thank the creamery for being a more task oriented job. This job is a place to interact with my typical peers and to feel good about myself. You are there as a social outlet. I don't know what I did without you before. Thank you

8. i have to thank the doctors that have kept there cool with my nonsense. I have to thank them for listening to me even when things don't make sense. I need to thank the doctors who think my side affect  complaints are weird, but trust me when I say they are real. The doctors are there to show me that I everything will be okay. They are there to keep me healthy. If I didn't have doctors who listened, I probably wouldn't be sane right now. DARN LAMICTAL

9. I'm thankful for the autism support group on campus. I am thankful for the friends I have made through there. The experiences I have been able to share and learn from are more than I can ask for. I have somewhere that I can go and learn from others just like me. I have a place where I can use clinical terms that people understand because they have the same issues. I have peers that get my sense of humor. I have people to hang out with and who don't care that I am different.

10. I am thankful for my mothers coworker who has saved me form the brink of insanity on a number of occasions. In October of last year she had started working for my mom from our house. A couple days before thanksgiving I had asked if she could bring her kids up to hang out the day before thanksgiving. The Tuesday before Thanksgiving her kids were in a car accident when she called us to let us know she wasn't sure she would make it in. Today her kids are doing great and she did come in for a little bit that wednesday. She decided she had to leave early though which made me upset. She understood me though and knew I struggled with change. She took the effort to let me and her daughter make cookies and then we went grocery shopping. She compromised by taking me to get groceries since she couldn't stay the whole day. She is always there for me and my mother. The trips to the bank and to the grocery store to keep me stimulated. The stays at her house so I could have a break from my own family and since I can't have typical sleep overs. The safety net when my parents are away. The lunches out with my mother and I to the waffle shop and quickie chickie. The McDonald's sweet teas she insists on us getting even though I don't sleep at night. The times when we turn across a 4-5 lane. She is also there to support us when my mothers thinks I am going to be famous due to some reality show. She is there for my mother and I.

11. I'm thankful for so many things in my life. The fact that I have a roof over my head and a family to love me. I have people that care about me and I have hope for the future. I may not have said everything I am thankful for but there are so many things. I have thankfulness in my heart.

Friday, November 16, 2012

I'm a real boy

   If you know me, you know that my family and I are huge disney fans. I have been to disney more times than I can count, have a whole disney scrapbook and could probably find something in my life that resembles disney. Tonight I am going to relate myself to Pinnochio. Pinnochio was once a wooden doll that a man had built, but then in the end, he was a real boy. Today I feel like that real boy because I feel like a typical human being too. I have always used aspergers as an excuse or a crutch, but right now I don't even feel like I have it. Trust me if you have it, you feel different! People with aspergers get insulted when people that are neurotypical think they don't have aspergers because they do struggle.
     In our school district k-5 is elementary school, 6-8 is middle school and 9-12 is high school. When i started 6th grade at the middle school, I was released of some of the supports I originally had in elementary school. I was in learning support only as needed. I really started to struggle academically so I got involved in home schooling. I used this as a time to catch up. 
     When I was home schooled, there was no way my mother would home school me. My mother had her own business to run and two kids to take care of. Everyone has their strengths and weaknesses and home schooling was not a strength of hers and that was okay. I ended up getting home schooled by a family friend of ours who taught two other girls. We had a regular school day, but we worked on our own school material, had recess and went out to eat once a week. We would typically go out on friday's to a restaurant of our choice and sometimes we would go to Olive Garden on Thursdays. Having recess and going out to eat were great times to practice our social skills. 
     One of the girls I was home schooled with was boy "crazy". She was at that age where she had just gotten a cell phone, loved texting and had a crush on every boy out there; any drama that was in her life revolved around a boy. She couldn't get enough of it either. I would always tell her that she was boy crazy and she would argue back that I was. Where she got that from, I don't know. You can even ask my mom if I have been boy Crazy. Melissa would even ask me every once in a while if there was a boy I was interested in. It was like pulling teeth to try to get a decent answer out of me. I always had guy friends but no boy friend. I never understood the point of boys at those ages; they were stupid and unattractive. Over the past couple weeks things have changed. 
     I have always worried about not being interested in boys, but the past couple weeks its been like the difference between day an night. I went from not being interested in boys to being boy crazy. I have one guy who I walk to the student union with every day after English. There are also two guys from my support group that I enjoy hanging out with and I have a ton of guys at work that are really cute. I went from worrying about whether I was ever going to be attracted to anyone and worried about someone accepting me to feeling very positive and really fast. That its self has been a huge change, but I am growing in so many other ways. 
     I have found a great new form of independence within the last week and a half. I now have transportation anywhere I want in my county without having to beg my parents to take me. There is a special service set up in our area for people with special needs and seniors where they do curb side pick-up and drop off. All I have to do is call a day in advance for a ride and if I need to cancel, I can cancel within 45 minutes of my ride time. I have 13 hour days without seeing my parents sometimes.  am able to schedule my transportation with out my parents help even thought my mom doesn't think so and I am taking control of my social life. Yesterday I had to cancel a ride because I got called into  work and my mother reminded me to do it by pestering me all day by calling me or texting me. I called an hour and a half before my ride was suppose to arrive. I got a voicemail from my mother telling me she made sure my ride was cancelled because she figured I wouldn't do it. Hahaha, she's so funny, I am a responsible adult now. I did it myself!!! 
     As far as my social life, I can't keep up. There have been times where I have gotten really upset because I never have friends to hang out with. Now school and work consumes my life and I still have a social life. It took me years to figure out that I had to plan stuff in advance and I needed to find people that I got along with, not just the cool people. I now have one friend that comes over to my house once a week to hang out with me and my family. If my parents are out for the night we order pizza and bring it back. Sometimes we go to a strip mall to look at craft supplies or little stuff like that, but we are really independent. Today I had to send my mother a facebook message to give her details of my thanksgiving week. I don't even know what my thanksgiving week holds yet. I do know that I work three days, i'm going out to breakfast with a friend tomorrow, I am going over to a friends house for dinner one night, I am going out to diner and a movie one night and god only knows what else. This is if no one blows me off. The fact is i'm planning stuff. 
     The other night our family was sitting at the dinner table together. I always get anxious around the holidays because we don't have a lot of family.I got that from my mom and now its annoying her because she has finally gotten over it. The holidays are always hard for everyone. I was sitting at the table with my family and my friend that comes over weekly was sitting there too. We were talking about up coming breaks and how work would play into our breaks and how are family would play into our breaks. I am very routine oriented so I was trying to figure out how we could squeeze her into our schedule over thanksgiving break while still fitting in her schedule too. We talked about it and she is going to be here all of thanksgiving break. She is having family come over, but will be pretty free other than work. We might actually go out to eat all together: her family and mine. 
     After talking about thanksgiving we continued to talk about the rest of the breaks for the year. We discussed christmas break and spring break. Fortunately she will be in town for both occasions. Honestly though, I can't believe all my good friends are from out of town now. When I was a child everyone left to see extended family. Now everyone leaves me to see immediate family. As the conversation proceeded I talked about going on vacation for spring beak. Spring break is always really tough because our school district doesn't have off, but our college does, so everyone leaves town anyway. Now that I am in college I would love to have a spring break. Its really hard to thought because my brother still has school and he's in high school, which means he has to go to school or he will miss a lot. 
     The other year, my parents had said something about me taking a weekend long vacation with a friend. I was hesitant about it for a while. The only person that I would go with was way older than me. It would be really weird, but now that I am growing more, it sounds pretty cool. My parents always said how so many kids go on vacations with there friends as teenagers, but my brother and I weren't going to be allowed; as we get older I think my parents figure stuff out and its okay. I think I'm ready to take the next step. I proposed that even though the rest of the family may not be able to go on vacation, Laura, my friend and I could go on a weekend trip or something. 
     When I proposed this idea my mother told me I was feeling my oats. I originally thought that feeling my oats meant showing off. The kind of showing off when you feel good. This time it meant that I was showing off in a way that I felt I was ready for more independence. I think I am and I think my parents are okay with it. I am turning into a typical young woman and it feels good. We discussed all options including my mother come with us and it could even just be a girls weekend. In general I am ready to go on a vacation with a best friend. Darn it!!! 
     This semester has been really good. I can't believe how much I have grown and what my future will hold. I have a feeling there are some exciting things come my way and possibly yours. We're only scratching the surface, but their are some pretty cool ideas my family has for me in the future. I personally want to write a book about my success with aspergers and for some reason my mother is under the impression that I am going to be famous because of some great reality television show. I thinks she's crazy. There are so many options out there, another of which is public speaking. I sjust feel like I am growning and more doors are opening for me each day. :)

Monday, November 12, 2012

Psychologists

     Psychologists are absolutely pointless, that is in my opinion. I have seen them my whole life and only ONE has done me any good. I'm pretty sure I can't even county how many psychologists i've seen. Some of them I remember and some of them i don't. I have had at least three neuropsychological exams and another intake from psychologist, just to try and get a diagnosis. Don't even mind how they act.  YET!!!

     Within the first 24 hours of my life I had already stopped breathing four times. I was life flighted to a hospital that could give me better care after that. I spent the first week of my life in the NICU. where they performed various tests and sent me home with my brand new parents, on an apnea monitor.

     Years later, I started having "episodes" that were later classified as seizures. When I had diagnostic testing done for the seizures, they noticed that my right hippocampus was abnormally small, whether that was due to a brain injury or a genetic glitch we may never know.What ever the case was it continued to give me problems up until this point.

     When I was in preschool/kindergarten my teachers started noticing differences in my psychosocial development compared to my peers. I would often times play by myself, due puzzles and give too many hugs. I do remember liking puzzles, but I don't remember preferring to be by myself. My parents got concerned and I ended up seeing a psychologist in my area who will go by the name Dr. T.

      I personally loved Dr. T. I don't really know what all he did for me, but I distinctly remember him having a HUGE bag of hospital doll stuff, which I now know as playmobil. He kept these doll toys which you could pretend were hurt or needed a wheelchair in his tiny walk-in closet. When he needed to talk to my parents he would put me in the closet to play with the playmobil, which I absolutely loved. Then one day when I went to see him, it was no longer there. I have no idea where it ever went, but I do know it disappeared.
  
     Another time when I met with Dr. T, he put me in the closet to play again, so he could talk to my parents When he brought me back into his office, he had my parents leave the room. He then put a smiley face on the board and he put a frowny face on the board and asked me what they were. Now that I look back, I think he may have been looking to see if I had autism. I don't remember much more about him, but I do remember my parents didn't like him much. I think it may have been that he wasn't much help.

     I went a while without seeing someone. Then in third grade, I went to see a guy downtown. I don't know what this guys name was, but at the time I was told that I was seeing him because I fought with my brother too much. Today I look at myself and think Really?? I am not sure how I could have been so gullible or understanding of something as simple as that. My parents would take me out of school to see this guy and we would talk. It was a really emotional time for me, because the only thing I remember him telling us at every appointment was that we needed to tape record how loud and awful I was during the fights so that i could actually hear and see what I was doing. It was really hard to hear such harsh criticism at that age. These sessions were always followed by a few minutes in a playroom with the doctor. I'm not sure why it was with just him. I also remember playing with a bobo doll, which I also find absolutely hilarious, since it was in a psychologist office. If you don''t know why, look up bandura.

     A few more years went past and I was diagnosed with nonverbal learning disability which to this day, I still get questioned about it because I am so verbal. Yeah this condition doesn't mean that you aren't verbal. That diagnosis stuck for quite some time. It was pretty much a catch all label for doctors to use so I could get some support services at least through elementary school. it was also a term they used so they didn't have to say they didn't know. Then came middle school.

     In middle school I was put in an itinerit support classroom where I received very little help and was starting to suffer. I was getting A's and B's and I wasn't meeting standards. We didn't really understand it, but now we know that the teachers were actually grading me differently than the rest of the students because I had a "disability". i finally ended up switching schools to a local charter school where I could get more help.

     The local charter school that I went to, noticed that something was wrong and they thought I might have aspergers syndrome. They had a psychologist come in to talk to the guys and then to talk to the girls in a four-week session and I can't remember what it was about, but I do remember that instead of calling her Dr. Skinner they called her Darth Skinner because they didn't like her. The school ended up referring me to her.

     I had never heard of aspergers before, but knew I was being tested for it. I looked it up and did a bunch of research on it and realized that it as a lot like me. When she tested me, she came to the conclusion that I didn't have it, but I had symptoms of it. The reason she didn't give me the diagnosis, was because I had a 'brain injury'. Today I know so many kids who have a brain injury and are diagnosed with autism. We went to see her for a while, but we didn't really like her that much so we stopped going. We really didn't see any point in it. I think she had good ideas, but just wasn't the right idea for us. She didn't get the family dynamic aspect.

     We then waited a couple more years, until my family doctor finally told us that we needed to see a psychiatrist because they could give us talk therapy and if need be, medication. A psychiatrist finds something to give you medication for and doesn't give talk therapy at all. The psychiatrist I saw, was actually decent and I think he has helped me a lot with my anxiety. At my first appointment he mentioned to us a doctor by the name of Dr. Melissa Hunter, which is awesome. He told us that she did a lot of cognitive behavioral therapy, but didn't know if that would help because I had the brain injury. I had a med check up the next week and he mentioned her again except this time I met her.

     After my appointment he,  took us down the hall, knocked on her office door and we went in to meet with her. It wasn't an appointment, but we went in and said hi and talked for a couple minutes to see if she was an option. By the end, we had an official appointment set up to do an intake and start therapy. From the moment I stepped in her door, I know she was the right one. I remember her talking to us about my routines and schedules. I was thinking in my head about the fact that I don't have aspergers, so don't automatically assume stuff, but I did like that she understood what she was talking about and what she specialized in. I just had this feeling that if she didn't get me then, she would very soon after. I have never had that feeling with anyone else.

     During my first intake appointment, I had to sign releases since I was a teenager, but my parents had to sign stuff too. We talked about confidentiality and we talked about my history. At that time, I had just  had a huge melt down that included kicking a whole in a wall; a first for me. That evening, following the meltdown, I spent time with my friends at youth group. We had a small group discussion where I needed to take a break and take a walk. Something just wasn't right. I came back and from what I understand, I needed help. I ended up getting in my dads car and asking him what I was doing and where I was going. That was the first episode I had that we now call seizures. We had discussed these with Melissa at this appointment.

     Somewhere in the middle of the appointment, I ended up having one of these attacks. I am not entirely sure why, but I did. I had walked out into the hallway, where I sat down because I was "hot". My horseback riding instructor sat across from me, because one of her children just so happened to have therapy at the same facility. I took some deep breaths, got up and went to a set of two doors while I was still in a daze. I looked at both doors as my teacher sat behind me, telling me which door to go into. I tried opening the door to no avail, when I decided to know and Melissa let me in. I sat there, with my head down, Melissa in front of me, and my parents on either side of me. I just kept saying I don't know whats wrong, but something is wrong. Later Melissa told me it was an anxiety attack. My father eventually took me outside for a walk and brought me back inside. We sat and talked about my history and goals as Melissa let me play on the computer to distract me. That was the beginning of my amazing journey with her.

     Further into the year, we began adding new things to my therapeutic environment. I started using an emotions journal for when I was really upset. I would go to my learning support room or my bedroom, where I could just cry and let my emotions out without getting too upset. Along with using a journal, Melissa taught me how to deep breathe to calm myself down better, in situations where I couldn't use my previously learned strategies. Melissa ended up contacting my learning support teacher at that time, to let her know what we were working on and to help me transfer that to the classroom. I had a bucket in my learning support classroom, kind of like the cubbies you have in preschool. I would keep my journal in there. That was just the beginning of my experiences to come with Melissa.

      I'm pretty sure I was the first patient of hers since she was new. Once she started gaining more clients, she started a social skill group. I was the only girl and I was the oldest child in the group. She let me know that this was the case, but I wanted to give it a chance. This was the first of two groups she held that I had taken part in. This was the first time I had actually started practicing less interrupting with a behavioral/social skills training approach. We learned that interrupting isn't good, but you can using it in emergencies. We got rewards throughout the weeks and we had a pizza party an wii playing day. At the very end, we were able to go to a park and play with each other, ending with awards and social skill bingo. I do have to say, I think I tested my limits there because Melissa had to put strict limits on where we were allowed to go; the playground, was my school's playground and I wasn't a flight risk.

     In the second social skill group, it was mostly girls and we were all with in a particular age bracket, which helped tremendously. We worked on vital skills that pertained to our specific needs and our transition to adulthood. One of the most important skills I learned from this group was point of view. I learned about empathy and what it meant to be concerned for others and not so self-centered. I think this was the most crucial lesson I have ever learned. We continued working on interruption and I am still working on interrupting to this day.

     I continued in therapy with Melissa up through some point in eleventh grade I think. Melissa was just thinking about starting up a teen group or a young adult group that would start the in november. I had seen her on a Wednesday and she told me that the group was cancelled because there were too many schedule conflicts. That friday, my mom and I were standing in the grocery store when my mother told me that I had a doc appointment with melissa on Saturday. I was a bit shocked; I asked her why. She told me she didn't know, but I knew something was going on. This never happened. I started coming up with solutions to the problem. My best conclusion was that melissa was moving, my worst fear. I asked my mom, where she continued to say she didn't know.

     That saturday, when I arrived at the doctor's office, I didn't have to check in, which was odd. I came upstairs and walked into Melissa's personal office, with gloom on my face. She told me not to worry, but I knew it was the end. The whole appointment was purely to let me know that she was taking a new job that was an hour and a half away. She wanted this appointment to happen because she didn't know how I would handle it. We had a really unique professional relationship. We knew more about each other than most therapists and clients, but with in the appropriate boundaries. We talked about family vacations and company we had over. i had one more appointment after that before I had to let her go. After that, there was an agonizing six months before I could talk to her again.

     When I talked to her again, she announced that she was pregnant. I was so happy for her because I always knew that she would be a good parent when the time was right. I always pictured her having kids and I was really surprised that she hadn't had a child before she had left the original facility. She was fresh out of school though. At this point we would talk occasionally and email.

     Before, I had left Melissa as a therapist, she had set me up with Dr. P. She warned me that she was a bit dry, but that she would be able to help me. My mother would take me to these appointments, which were actually in the same facility that Dr.T worked. We met with her a few times and decided that she was cut out for us. She was very dry, there were awkward moments of silence and she thought my only problem was anger management. I'm not really sure where that came from. We eventually let Dr. P know that we would come back to her if we needed help.

     After having minimal contact with Melissa, having no therapist and know that the baby would be arriving soon, my parents and I had made a mutual decision that it was best to go back to Melissa even though she was an hour away. I had serious fears about seeing another therapist to begin with, there was no way I was going to try another person, before i tried the drive to Melissa.

    This past summer, Melissa decided to leave her job again. She gave me the opportunity to be acknowledged and say a few words at there annual charity ball. They had looked at this blog and I had read one of my posts. That was the end to DCI for me. Melissa has now moved on to a new position, but she sent me to yet a new therapist to complete her job with me.

     Once again, I was in the same situation as so many times before. "How do you feel about that", the therapist would ask. "So what your saying...", the therapist would reply. This goes on a every session and I feel like I get no where. I dont' get the point of psychologists. We need more melissa's. We need people who know how to work with autism, not with emotions. We don't need to tell someone the answers to our problems, we come to them for help and to solve our problems. Do you see where this is going? All those other therapists out there are trying to solve there own problems. Melissa solved mine. Therapy will never be the same, but I have a great group of people supporting me in so many other ways. I have an aspergers support group, great bosses and great friends. heck with the doctors

Sunday, November 4, 2012

No Goodbye, Farewell, until we meet again!!!

     Every spring during my grade school years, I would start to get tired of school and get ready for summer. Im always ready to get out of the hot old buildings that our district refused to put air conditioners in and enjoy the sun. Then in the fall, it was nice to start back up again. It felt refreshing to pick out new classes, reunite with old friends, and reassure yourself that this is going to be the semester that you work hard in. Then as time goes on, you get settled in your classes; its just how life goes. Sometimes that is not the case though. Sometimes that doesn't always work though.

       Yesterday, which was a Saturday, I went to check my school email and was shocked to see what I had. There was a new email that read, new teacher on Monday. I opened the email up and this is what it said. 


Dear Class,
For personal reasons I will not be teaching our ENGL 15 class any further this semester. Despite this, I want everyone in the class to know I enjoyed our time together, and I hope all of you can keep applying what you've learned in class for the rest of your college careers. 
Beginning Monday, I am turning over teaching duties to blank, who is an excellent rhetoric teacher; I'm sure you all will learn a lot from her. She would like the class to read the "School Lunch" memoir on pages 108-112. She also has some extra material she would like everyone to look at before class on Monday:
I know everyone in the class will go on to have fruitful careers at Penn State.
Regards,
Blank 

It may not seem that big a deal to some people, but this situation is very complex. Its not as if you teacher had been pregnant all semester and had a baby. Its also not as if we are in elementary school and lastly its not the beginning of the semester, but right in the center when everyone has finally gotten used to everything. 

     There are also some more complexities for me since I have various disabilities and physical limitations. I'm not saying that these are a problem or that I am using them as a crutch, but they may make things more interesting. First off I get disability services through my university which means that in the beginning of the year I have to give them accommodation letters. This class starts tomorrow, do I need new letters to give to the teacher or will they have handed over the letters to? Does this mean I have to set an appointment up with the ODS or not? It also means that I have to tell one more person the wonderful news that I have a seizure disorder and that I have a medical bracelet, which they don't always take very well. Its also really tiring to have the bad reactions over and over again and I just wish that I had someone that knew me and felt comfortable with my circumstances and trusts me that my seizures aren't bad. This would only happen if they had known me for a while and really knew what to expect and that its not that big a deal. 

     Now add that this is a class that has reading intensive parts that we read in class and I have visual issues that make my eyes tired really easily. If I don't have my disability information with them on monday, I may have to struggle a bit until we can work out personal accommodations that may be available per teachers discretion since there aren't many accommodations for in class. I need in class accommodations sometimes, but if you go to your disability specialist, the only accommodation that you get is extended time on in class projects, which in the end doesn't help at all because that means that you just get to complete a project on your own time. That doesn't mean that with a reading assignment you can just read it on your own time. There are in class discussion about in class reading and there are peer reviews of 5 page papers for two people in a 50 minute period while answering questions about said papers. 

     Another issue is that I have aspergers. We have a class of 25 students, which means that have to tell yet another teacher about my aspergers where they may not understand it. Why I have to tell them, you ask? I have to tell them, because sometimes I answer quetions/raise my hands too much and I can discuss what I can work on in class if I am having social trouble. They are able to accommodate me more than you may know by giving me visual cues. Now also take into consideration that I don't do well with change. Normally change is a lot harder for me, but if I cried just a couple years ago about a piano less being cancelled just one time and now I am dealing with my whole class being turned upside down, i'm doing pretty well. I just don't know what all it means. 

     I know this is a lot of whining, but its a lot of stuff to think about within a 48 hour period. I have to be ready to make changes asap. It may be a good thing in the end, but I really don't know what to think. I didn't really connect with the teacher before anyway, but still. I'm dealing with change really well and its not bad, I actually find it very interesting, its just putting all the pieces together in such a complex situation that is hard for the typical students to adjust to or take in. 

Thursday, November 1, 2012

The problem with the DSM

    You may beg to differ, but I have a serious problem with the DSM. If you disagree, with me don't be afraid to share your opinion. I have not always had a label that fit in the DSM, nor did I have one for most of my life. I didn't get diagnosed with an anxiety disorder until I was in 9th grade, neither did I get diagnosed with aspergers until I was 16. Before that I had a diagnosis that went by the name "nonverbal learning disorder", which pretty much meant nothing other than I had trouble with social skills. It was basically the "fake" aspergers diagnosis' of my time. Ooh wow that makes me feel old!!! Anyway, now that I have a "label", I have been provided many vital services that, if I didn't have, I probably wouldn't be where I was today.

     Let me start off by sharing with you all where I was before I had any diagnosis. Before my original diagnosis, I would have a tantrum if furniture was moved, there was a thunderstorm, there were sirens, there were stuffed animals, something was cancelled, and if I didn't get the pizza I wanted. (the pizza is a whole different story). Not only this, but I had significant trouble, with activities of daily living, routines and social skills. I was then given the diagnosis of ADD and put on medicine, which made my brain go haywire. Needless to say it was bad.

     I distinctly remember having this diagnosis back in third grade. At that point, I didn't know anything was wrong with me other than seizures. This was a vital time because it was a time of enormous growth in social and emotional maturity. This was the year where I got my first "group" assignment and my first "paper" to write. It was a research paper on the state of florida since I have grown up going to disney. You can thank my parents for that one. Once I was put on the medication, I started having major tantrums. I eventually got off the medication and I was fine.

     Next on the list of diagnosis' was Sensory Processing Disorder, which from what I understand is not in the DSM either because a psychologist i work with doesn't know what it is specifically since its not int he DSM or so she tells me. I'm not sure what type of sheltered world she lives in. Here nor there, I was tested for that when Iw as in fourth grade by an occupational therapist. She did the evaluation, but nothing added up to anything significant. Then it was on to the next thing, Nonverbal Learning Disorder. This is where  you are supposed to say, but you are very verbal. Oy Vey, please don't do that.  It purely means i have trouble with the nonverbal cues.

      Once I hit ninth grade, I was finally put with a psychiatrist who treated my anxiety and a psychologist who treated my "nonverbal learning disability" who I still feel has know one I can compare to because she is so amazing. She originally told me I definitely didn't have aspergers. I then replied by asking why exactly she didn't think I had this. The first thing out of her mouth (correct me if i'm wrong because i know your reading this) was that the biggest distinction with aspergers is a preoccupation or a perseveration on something. I then replied, trying to come up with an excuse for that and trying to convince her by saying that I perseverated on learning about disabilities, which is very true. She has learned her lesson since then and now knows me well enough to quit talking about myself in medical terms.
       I eventually started having some more issues and tantrums started coming back. My parents made a separate appt by themselves and without me where they discussed there concerns. What exactly went on during this appt, I'm not really sure, but something came out about whether I had aspergers or not. Dr. H as I shall name her told my parents that I wasn't the poster child for aspergers or NLD, but I needed better services to succeed. She said that she knew I could as long as I had the right supports. we finally got through the testing and I now have aspergers.
     Today I am happy aspie as everyone calls me. I have a future ahead of me. I have dreams that I know I can achieve. I want to be an occupational therapist so I can give back to children with special needs and make there experiences better than my own. I want more people to be like Dr. H, but they are just not. I no longer have tantrums if a piano lesson is cancelled. I no longer have a tantrum if I hear a siren and I no longer have a fear of thunderstorms. I am able to travel better than before, and I am able to balance my own FLEXIBLE schedule, probably more than my parents. I might even have a great public speaking career in my future as I have already gotten small engagements. Thank you LInda and Sharon.
      Now on to the nitty gritty stuff. My mother and I go around and tell everyone about all the progress I am and how happy I am. It may sound like bragging since not everyone is going to be the same. We all have our own strengths and weaknesses. We all do better with some treatments better than others and i seemed to find the right ones as a teenager. Now that I look back, I was going down a scary path before I had help and before I even realized it. Now that I look back I made so much progress, but if it weren't for my diagnosis' I don't know where I would have been.
        As of 2013, aspergers AND pdd-nos will vanish from the DSM. They are erasing this diagnosis so people with autism can get better services. They are moving aspergers into a category called social and communication disorder which is a brand new catch all; they thought autism was a catch all before. I didn't really have a choice, but to make my own opinion about this whole situation. I had mixed opinions and just like politics, no one is right and no one way is right so I really couldn't argue, but now I feel the obligation to do so. I now think that people with mental illnesses and neurological disorder should be on the board to create the new DSM.
       I wasn't sure what this change would hold for me. I was going to make my voice heard and let people know that I may be confused, but this was still in the works. As it has solidified, its gotten worse for me. Not only are they taking these out, but they are adding a broken heart as a diagnosis and nail biting as a diagnosis. NAIL BITING REALLY???? They are adding nail biting as an obsessive-compulsive disorder. The clinical criteria is enough biting to cause an infection. That's like saying scraping your knee as a kit automatically means that you are mentally ill because you impair your body by causing a scratch or infection from what bacteria gets under the skin.
        This really upsets me. I don't mind having depression as a diagnosis. I think it is vitally important to have that diagnosis and treat it. i also don't mind you calling a broken heart depression. What gets me is that they are denying individuals with aspergers the services that have helped me through my life because its too broad yet they are putting a broken heart and nail-biting in the diagnostic manual.
        The manual is to exclude those without mental illnesses and provide treatment to the most needy. Those with autism are more needy then those with aspergers and I do agree on that. People who have lost a loved one may need treatment for depression and grievance, but they don't have a broken heart and it has to be an impairment to daily living. That is purely adding to the dsm instead of subtracting from the dsm. Clearly psychiatrists can't do math. I guarantee that once you put nail-biting into the manual you will have 90% of kids in a psychiatrists office getting medications filled on a regular basis. And you thought that we were over diagnosing aspergers and ADHD. You thought we were over diagnosing mental illness too. I didn't know what to think then, but no your really sliding on thin ice peeps. If people think your overdiagnosing, I don't know what they will think of you in the future.
People with aspergers and autism should all get services, but if you think too many people are getting diagnosis' don't put nail biting into the dsm.
    

But I Can and No One Will Stop Me!

       I got off of the bus one afternoon during my middle school years to see an elaborately decorated yellow car sitting in my driveway. I...