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.
Dickinson Mental Health Charity Ball
Thursday, November 1, 2012
Saturday, October 27, 2012
Vanishing Pain
Lately there has been a lot of struggle in my life. Obviously I have the aspergers. I also have anxiety and sleep insomnia. On top of that, if you have followed me for a while, you would know that my seizure disorder has come back. This has been a very painful time for me for several reasons. First off, its awful to have someone tell you that you have a condition that you had outgrown. I have also had help along the way though. One of the best things thats helped me is Camp Victory. Camp victory is a special needs camp for kids of all kinds. There is no place like Camp Victory.
When I was in third grade, I had met with a new neurologist. As I was leaving her office, she gave me a pamphlet with a huge chameleon on the front. The pamphlet read "Camp Chameleon." It had things that we would do at camp (fishing/boating, Archery, Swimming, Arts/crafts, games, ropes course etc). Along with that, on the one side of the pamphlet, they had a whole list of staff and doctor's who would be at camp. My mom knew right away that this was the place for me.
I have to say that I was a bit anxious to go away from home. It was only for a weekend, but it was two hours away from home. I had never been anywhere with out my parents or people close to me. I was going head on into this. On the day of the trip, we embarked on our trip. Mom had packed my suitcase with everything I needed. It felt like it was a really far trip, but that's because I was little.
We got off the high way and headed into the country. I couldn't even imagine what this camp was going to be like. Along the way we talked about what I would be doing. I kept searching for what camp could possibly be like. One of the first signs that I was near camp was a huge pond. I wondered if that was where camp was, but we weren't sure. It was close to camp, but we didn't know. We turned onto the property which was out in the middle of no where. We headed down the road looking for what was next. We finally arrived at the main building and I saw the swimming pool behind it. I knew I was in for a great weekend.
I hopped out of the car and was greeted by the staff and the doctors. We checked in my medications and went inside to have some fun. Of course we had to unpack before I did anything fun so we went over to our fully furnished cabins with tiled floors and a bathroom with flushing toilets. it was amazing and they even had bunk beds which thrilled me. The first year was a circus theme. We headed over to the Rec Hall where I saw table after table full of crafts. I was hooked immediately. I was worried about my parents leaving, but all the fun stuff distracted me and I didn't even realize my parents had left. One of the crafts I remember doing my first year was a horse head I painted that we would attach a post to so I could put it in my front garden. I had help from the nicest people from the start. They took me to each station to have some more fun. They were very comforting and caring.
Later on that evening we were able to take a walk around camp and see what all there was to see. We also played some pretty crazy games with putting shaving cream on our counselors head and then aiming cheetos to throw on them. We also went on a hayride at one point. We had a camp fire where we had an awesome lady named KJ come with her guitar and sing with us. To this day I always miss her along with camp all year. The music took all the pain away and we were able to sing silly songs.
Before I knew it my parent shad arrived that Sunday. I had a small suitcase full of junk from a carnival we had he day before they arrived. I swear I don't think I have ever seen that much fun stuff for one child over one weekend. We were spoiled To this day we always get some special treat each year of camp we go to. We ended the week with our parents and a lady named K would bring drums in to play with us.
From that weekend forward I continued to go to this camp for 10 years. I got to the point where I pretty much had memorized some parts of the drive. As soon as I got close to camp, I got really excited. Once we arrived, I would jump out of the car and say see ya to my parents before we wold even unpack. For the last couple of years of camp, I would arrive early because I was so excited. it was family.
During this weekend, I was in my home away from home. All the agonizing pain of not being accepted for who I was, was gone. I was with people who understood me. I didn't have to be judged for my aspergers nor my epilepsy. I have to tell you, before this weekend, everyone I knew was scared of my seizures. One lady that had a summer camp i went to felt so uncomfortable, that I had to stay in waist high water while swimming with a life jacket on too. I know I couldn't swim, but up to my waist with protection? She was scared I would have a seizure.
My first year of camp, we took a nature walk. When we hit the "forest" the first thing we saw was a rock wall to climb. We weren't allowed to climb it much to our dismay, but we were told that we could do it the following year. Low and behold we were able to do this every year forward. My guess now is that it was just being constructed and evaluated for safety at the time as we have added several new things every year and our camp normally come to early in the summer to experience he new thing until the next year. This year we got an awesome zipline.
We also have a great lake to boat and fish on. We always have fun using our paddle boats on the pond. The only thing that tempts us to get in to trouble is a beautiful fountain in the middle that we like to go under but were not allowed. Its tough work paddling that boat, so sometimes we take a break to catch some fish.
Every year we have a fabulous camp fie with kj and her guitar. We sing all sorts of fun songs and we also have some favorites. If its rainy we go into the dining hall and use the cozy fire place. We don't let the rain stop us from having fun. How can you have a campfire with out s'mores?
Every year at the end of camp we have a dinner with the families and we get to sit with our friends and their families. We have an awesome award ceremony and every camper gets to feel special. My mom has an awesome business that provides us with a new gift every year. This year below it was a water bottle with camp chameleon on the front. (my specialty camp). One year I got recognized for being the best rock wall climber and another year I got the award for being the best stick bug maker ( a craft we had at our insect theme week).
And here it is, the rock wall, my favorite. We have three rock walls ranging in difficulty with a cargo net on one side. I always climb the net and the wall. here I am being let down after a successful climb up the net.
here I am with a best bud. He had the same name as me, which I find is pretty cool. He went to camp as long as I did. First year and last year. He is probably the sweetest little guy I have ever met. Of course we are older now, but still. We are only a year apart too. In the background is us getting ready for an unbirthday party for the tenth anniversary of camp itself ( my eighth year).
Tenth year of camp itself again. We got to dress up and go trick or treating at the different cabins and we were split up into groups. This year we got a third camper with our name. Its amazing that out of the 15 campers 1/5 of us had the same name. Pretty cool huh? For years we would distinguish by boy and girl insert name. This year we couldn't do that and the two girls also had the same first initial of our last name too. Made it a little difficult with crafts. I decided since we had the same initials I would say my name and how many years i had been going to camp, but that didn't work either because she was as old as how many years I had gone each year.
My final year at camp. Can you picture anyone else happier? I love this camp. I got my graduation gift from camp and was very enthused. This camp couldn't have done for me than it has. Sadly I am no longer a camper, but fortunately I am still connected to the gang and help out every year now, which mean a lot to me. I am able to give back to something that meant so much to me. I am able to give younger campers the positive experiences I had.
Two years ago, I was filmed for a documentary for Camp Victory. I got to add my input and my parents did to. They also filmed me having a good time at camp. My parents highlighted how happy I felt at camp. all the pain disappeared for the weekend and to this day I miss camp after the summer is over and can't wait until the next year. If you are interested int eh documentary, which shows how amazing camp is, its called The Camp Victory Story and it is through WVIA a brain of PBS. There is a trailer on youtube and you can by the dvd. Well here is a photo of the camp experiences through the years.
When I was in third grade, I had met with a new neurologist. As I was leaving her office, she gave me a pamphlet with a huge chameleon on the front. The pamphlet read "Camp Chameleon." It had things that we would do at camp (fishing/boating, Archery, Swimming, Arts/crafts, games, ropes course etc). Along with that, on the one side of the pamphlet, they had a whole list of staff and doctor's who would be at camp. My mom knew right away that this was the place for me.
I have to say that I was a bit anxious to go away from home. It was only for a weekend, but it was two hours away from home. I had never been anywhere with out my parents or people close to me. I was going head on into this. On the day of the trip, we embarked on our trip. Mom had packed my suitcase with everything I needed. It felt like it was a really far trip, but that's because I was little.
We got off the high way and headed into the country. I couldn't even imagine what this camp was going to be like. Along the way we talked about what I would be doing. I kept searching for what camp could possibly be like. One of the first signs that I was near camp was a huge pond. I wondered if that was where camp was, but we weren't sure. It was close to camp, but we didn't know. We turned onto the property which was out in the middle of no where. We headed down the road looking for what was next. We finally arrived at the main building and I saw the swimming pool behind it. I knew I was in for a great weekend.
I hopped out of the car and was greeted by the staff and the doctors. We checked in my medications and went inside to have some fun. Of course we had to unpack before I did anything fun so we went over to our fully furnished cabins with tiled floors and a bathroom with flushing toilets. it was amazing and they even had bunk beds which thrilled me. The first year was a circus theme. We headed over to the Rec Hall where I saw table after table full of crafts. I was hooked immediately. I was worried about my parents leaving, but all the fun stuff distracted me and I didn't even realize my parents had left. One of the crafts I remember doing my first year was a horse head I painted that we would attach a post to so I could put it in my front garden. I had help from the nicest people from the start. They took me to each station to have some more fun. They were very comforting and caring.
Later on that evening we were able to take a walk around camp and see what all there was to see. We also played some pretty crazy games with putting shaving cream on our counselors head and then aiming cheetos to throw on them. We also went on a hayride at one point. We had a camp fire where we had an awesome lady named KJ come with her guitar and sing with us. To this day I always miss her along with camp all year. The music took all the pain away and we were able to sing silly songs.
Before I knew it my parent shad arrived that Sunday. I had a small suitcase full of junk from a carnival we had he day before they arrived. I swear I don't think I have ever seen that much fun stuff for one child over one weekend. We were spoiled To this day we always get some special treat each year of camp we go to. We ended the week with our parents and a lady named K would bring drums in to play with us.
From that weekend forward I continued to go to this camp for 10 years. I got to the point where I pretty much had memorized some parts of the drive. As soon as I got close to camp, I got really excited. Once we arrived, I would jump out of the car and say see ya to my parents before we wold even unpack. For the last couple of years of camp, I would arrive early because I was so excited. it was family.
During this weekend, I was in my home away from home. All the agonizing pain of not being accepted for who I was, was gone. I was with people who understood me. I didn't have to be judged for my aspergers nor my epilepsy. I have to tell you, before this weekend, everyone I knew was scared of my seizures. One lady that had a summer camp i went to felt so uncomfortable, that I had to stay in waist high water while swimming with a life jacket on too. I know I couldn't swim, but up to my waist with protection? She was scared I would have a seizure.
My first year of camp, we took a nature walk. When we hit the "forest" the first thing we saw was a rock wall to climb. We weren't allowed to climb it much to our dismay, but we were told that we could do it the following year. Low and behold we were able to do this every year forward. My guess now is that it was just being constructed and evaluated for safety at the time as we have added several new things every year and our camp normally come to early in the summer to experience he new thing until the next year. This year we got an awesome zipline.
We also have a great lake to boat and fish on. We always have fun using our paddle boats on the pond. The only thing that tempts us to get in to trouble is a beautiful fountain in the middle that we like to go under but were not allowed. Its tough work paddling that boat, so sometimes we take a break to catch some fish.
Every year at the end of camp we have a dinner with the families and we get to sit with our friends and their families. We have an awesome award ceremony and every camper gets to feel special. My mom has an awesome business that provides us with a new gift every year. This year below it was a water bottle with camp chameleon on the front. (my specialty camp). One year I got recognized for being the best rock wall climber and another year I got the award for being the best stick bug maker ( a craft we had at our insect theme week).
And here it is, the rock wall, my favorite. We have three rock walls ranging in difficulty with a cargo net on one side. I always climb the net and the wall. here I am being let down after a successful climb up the net.
here I am with a best bud. He had the same name as me, which I find is pretty cool. He went to camp as long as I did. First year and last year. He is probably the sweetest little guy I have ever met. Of course we are older now, but still. We are only a year apart too. In the background is us getting ready for an unbirthday party for the tenth anniversary of camp itself ( my eighth year).
Tenth year of camp itself again. We got to dress up and go trick or treating at the different cabins and we were split up into groups. This year we got a third camper with our name. Its amazing that out of the 15 campers 1/5 of us had the same name. Pretty cool huh? For years we would distinguish by boy and girl insert name. This year we couldn't do that and the two girls also had the same first initial of our last name too. Made it a little difficult with crafts. I decided since we had the same initials I would say my name and how many years i had been going to camp, but that didn't work either because she was as old as how many years I had gone each year.
My final year at camp. Can you picture anyone else happier? I love this camp. I got my graduation gift from camp and was very enthused. This camp couldn't have done for me than it has. Sadly I am no longer a camper, but fortunately I am still connected to the gang and help out every year now, which mean a lot to me. I am able to give back to something that meant so much to me. I am able to give younger campers the positive experiences I had.
Wednesday, October 24, 2012
An angel among us!!!
Today at school, I was sitting in the lawn of our Student Union building. I had just eaten lunch with a friend and I had work in an hour. I bought a little snack and headed outside to enjoy the sun. I ended up laying down and basking in the sun. Here in one of the top ten cloudiest cities in america, we don't take sunny days lightly. I watched as the clouds passed over me and I watched the blue sky change. I finally decided to snap a picture and upload it to facebook with this caption, "God showing his beauty on this glorious day." I put my phone down and continued to love the sun up.
Of course, since I am addicted to facebook so much, I decided to check for updates a couple minutes later. I got an update saying that the cloud formation I had posted, looked like an Angel. A couple days ago I had just posted on facebook that it was coming up on the two year anniversary of the last time I had seen my grandfather who died the february afterward. I had posted about how different things have been and that my Papa always watches over me and I can really feel it somedays. Low and behold the picture did look like an angel with a face, wings, and the rim of the gown.
As I was lying on the ground, I was enjoying the sun. The sun always reminds me of heaven when it shines between the clouds. Sometimes I feel like that is god opening heaven up for a bit. Today the sky was blue with a few clouds that I took a picture of. How could I have taken a picture so perfect in the formation of an angel and not realize it. How out of all the formations, did I pick the angel to capture? I didn't even know about it. Could this be God showing me and reassuring with me that my grandpa is up in heaven? Why did I capture this picture and it wasn't someone else that this happened to. I am going through a period of time where I am missing Papa.
When I saw that comment on facebook, my face lit up and I almost cried tears of joy. It was that ah ha moment when you realize there's something even more than just the sunny picture itself. It was much more powerful with a message behind it. Sunshine is happiness. I don't really spend a lot of time outside to enjoy the sun and the clouds, but on this day I did and on this day I saw my angel up in heaven.
I have always been a literal thinker which has made religion hard for me as religion is also hard for a lot of people. I always have so many questions surrounding religion and how stuff can happen. I don't pray a whole lot either. My family doesn't pray before we eat our meals or have formal prayer times. I grew up praying for my prayer requests and those around me. As I grew older and facebook emerged, i would just post praying or your in my prayers when someone requested a prayer. I never really DO pray. I hate saying your in my thoughts because I like to sound like I am more religious than I am, but sometimes maybe I just need to talk to god more and that it doesn't matter what others think; its what god thinks that matters.
That being said, I do have those God moments. I go through my day to day life and I take care of myself. I need to spend more time focused on my heavenly father who created me. I shouldn't just wait for moments like this to roll around. I always remember that god knocks and if we answer, he will come in. Well, this time I knocked and I knocked long enough and I think he finally decided to answer!!! :)
Of course, since I am addicted to facebook so much, I decided to check for updates a couple minutes later. I got an update saying that the cloud formation I had posted, looked like an Angel. A couple days ago I had just posted on facebook that it was coming up on the two year anniversary of the last time I had seen my grandfather who died the february afterward. I had posted about how different things have been and that my Papa always watches over me and I can really feel it somedays. Low and behold the picture did look like an angel with a face, wings, and the rim of the gown.
As I was lying on the ground, I was enjoying the sun. The sun always reminds me of heaven when it shines between the clouds. Sometimes I feel like that is god opening heaven up for a bit. Today the sky was blue with a few clouds that I took a picture of. How could I have taken a picture so perfect in the formation of an angel and not realize it. How out of all the formations, did I pick the angel to capture? I didn't even know about it. Could this be God showing me and reassuring with me that my grandpa is up in heaven? Why did I capture this picture and it wasn't someone else that this happened to. I am going through a period of time where I am missing Papa.
When I saw that comment on facebook, my face lit up and I almost cried tears of joy. It was that ah ha moment when you realize there's something even more than just the sunny picture itself. It was much more powerful with a message behind it. Sunshine is happiness. I don't really spend a lot of time outside to enjoy the sun and the clouds, but on this day I did and on this day I saw my angel up in heaven.
I have always been a literal thinker which has made religion hard for me as religion is also hard for a lot of people. I always have so many questions surrounding religion and how stuff can happen. I don't pray a whole lot either. My family doesn't pray before we eat our meals or have formal prayer times. I grew up praying for my prayer requests and those around me. As I grew older and facebook emerged, i would just post praying or your in my prayers when someone requested a prayer. I never really DO pray. I hate saying your in my thoughts because I like to sound like I am more religious than I am, but sometimes maybe I just need to talk to god more and that it doesn't matter what others think; its what god thinks that matters.
That being said, I do have those God moments. I go through my day to day life and I take care of myself. I need to spend more time focused on my heavenly father who created me. I shouldn't just wait for moments like this to roll around. I always remember that god knocks and if we answer, he will come in. Well, this time I knocked and I knocked long enough and I think he finally decided to answer!!! :)
Monday, October 15, 2012
A night under the sea
I have never been a huge fan of broadway musicals or performances. Nor have I been huge about seeing stuff at our local performing arts facility, but let me tell you, last night was the best night ever; I got to see Jodi Benson (the women who voiced Ariel) perform live with some of her broadway favorites as well as some disney songs. Of course she ended her wonderful performance with "Part of Your Wold".
As I look back at my childhood, the two main vacations I went on were to the beach or to disney. My first time to disney was when I was four and I have been eleven or maybe even twelve more times since then. Let's just face it, I grew up going to Walt Disney World and it is now a part of me, which may be the reason why I was able to relate to this performance and I was able to enjoy it so much. My favorite character isn't any of the princesses, but my favorite is good old Goofy.
Disney princesses were never a huge draw for me. The classic disney characters such as Micky and Minnie were more my type. As I said I loved goofy which is really ironic since I don't get sarcasm and since I don't have the typical sense of humor. Goofy always made me laugh, but last night I got to experience the life of Ariel from The Little Mermaid. She came to my current city to perform along with a local kids choir that was made up of several kids who had gone through an audition. This wasn't a choir of children who new each other, but a choir of the best. Jodi Benson loves kids, which really makes the performance even better because she was able to relate to the audience.
The performance that Jodi put on was probably one of the most informal performances that I have ever seen. The show obviously started out with a man announcing to turn our cellphones off and put our camera's away, but there was something odd about the man. He clearly was not a man provided by the theatre because he wasn't formal, but he was goofy. They opened the curtains for the children's choir to begin. As soon as the children were done, they scattered into the audience to take their seats with their family. This was the second thing I noticed that was informal. They took time out of the show to make you fear comfortable and put you in a family atmosphere where you weren't judged for your dress or actions.
Jodi was finally introduced where she sang her first song. Part way through a transition from one song to the other she went to grab a drink of water from the piano. She then told the audience that she said she did this because she had something in her throat AND because all mermaids needed water. It thrilled me that she didn't care that she had to take a sit of water while she was performing. She didn't care about how professional she was, she cared about performing with her passion, not her professionalism.
At one point, she had a red dress on and she was talking to the children and telling them to look at her red dress. She then said that they probably wished they had one to. She continued on this hilarious rant by twirling and saying how, ooh it twirls. Then she started imitating the children's reactions. In between her acts she was the most personable and funny performer I have ever seen. There were also tap dancers and men singing parts; the men stole the stage for some of it.
The one man that put on some of the songs sang a bunch of disney songs. One was from Ratatouille. He had the chef hat on, the accent and everything. He had a notecard clearly visible since he didn't no the words. Then he proceeded to sing Under The Sea and had to stand by the piano looking over his notes. It was absolutely hilarious. They didn't care about being perfect, they cared about their audience. If they made mistakes, they laughed at them and so did we. There was no offense either way.
I don't know if this performance was special because it was disney or that I had my hopes up. This was someone I wanted to see because she was Disney after all, but she didn't just sing disney songs. Most performances I either get bored or my eyes get tired; this performance I stayed in tune, awake and alert for the whole thing. Could it be the informality? I really don't know, but it doesn't matter. I had the best time of my life and thats what really matters.
She also shared how amazing it was that the songs she sang were written and how grateful she was for all that others had done for her. She expressed and shared stories of personal experiences with other disney creators. She believe it or not, is friends with the person who played belle in Beauty and The Beast. I definitely give this performance a two thumbs up. I never really like performances, but this one kept me involved.
As I look back at my childhood, the two main vacations I went on were to the beach or to disney. My first time to disney was when I was four and I have been eleven or maybe even twelve more times since then. Let's just face it, I grew up going to Walt Disney World and it is now a part of me, which may be the reason why I was able to relate to this performance and I was able to enjoy it so much. My favorite character isn't any of the princesses, but my favorite is good old Goofy.
Disney princesses were never a huge draw for me. The classic disney characters such as Micky and Minnie were more my type. As I said I loved goofy which is really ironic since I don't get sarcasm and since I don't have the typical sense of humor. Goofy always made me laugh, but last night I got to experience the life of Ariel from The Little Mermaid. She came to my current city to perform along with a local kids choir that was made up of several kids who had gone through an audition. This wasn't a choir of children who new each other, but a choir of the best. Jodi Benson loves kids, which really makes the performance even better because she was able to relate to the audience.
The performance that Jodi put on was probably one of the most informal performances that I have ever seen. The show obviously started out with a man announcing to turn our cellphones off and put our camera's away, but there was something odd about the man. He clearly was not a man provided by the theatre because he wasn't formal, but he was goofy. They opened the curtains for the children's choir to begin. As soon as the children were done, they scattered into the audience to take their seats with their family. This was the second thing I noticed that was informal. They took time out of the show to make you fear comfortable and put you in a family atmosphere where you weren't judged for your dress or actions.
Jodi was finally introduced where she sang her first song. Part way through a transition from one song to the other she went to grab a drink of water from the piano. She then told the audience that she said she did this because she had something in her throat AND because all mermaids needed water. It thrilled me that she didn't care that she had to take a sit of water while she was performing. She didn't care about how professional she was, she cared about performing with her passion, not her professionalism.
At one point, she had a red dress on and she was talking to the children and telling them to look at her red dress. She then said that they probably wished they had one to. She continued on this hilarious rant by twirling and saying how, ooh it twirls. Then she started imitating the children's reactions. In between her acts she was the most personable and funny performer I have ever seen. There were also tap dancers and men singing parts; the men stole the stage for some of it.
The one man that put on some of the songs sang a bunch of disney songs. One was from Ratatouille. He had the chef hat on, the accent and everything. He had a notecard clearly visible since he didn't no the words. Then he proceeded to sing Under The Sea and had to stand by the piano looking over his notes. It was absolutely hilarious. They didn't care about being perfect, they cared about their audience. If they made mistakes, they laughed at them and so did we. There was no offense either way.
I don't know if this performance was special because it was disney or that I had my hopes up. This was someone I wanted to see because she was Disney after all, but she didn't just sing disney songs. Most performances I either get bored or my eyes get tired; this performance I stayed in tune, awake and alert for the whole thing. Could it be the informality? I really don't know, but it doesn't matter. I had the best time of my life and thats what really matters.
She also shared how amazing it was that the songs she sang were written and how grateful she was for all that others had done for her. She expressed and shared stories of personal experiences with other disney creators. She believe it or not, is friends with the person who played belle in Beauty and The Beast. I definitely give this performance a two thumbs up. I never really like performances, but this one kept me involved.
Wednesday, October 3, 2012
Stolen
When I was born, I was rushed to the NICU within 24 hours, because I had stopped breathing on a number of occasions. This worried my parents a lot. There was a lot that I could've lost at the time, but our brains are like plastic and therefore we are able to compensate for what is lost. I have worked hard to get where I am now, but I feel like I am being stolen from also.
The past month, I must admit has been the most trying month I've had in the past two years. I have had three medication changed within the past month including, stuff for anxiety, sleep and seizures. Fancy that, the things I talk about most. Its amazing what therapy can do to help you compensate for what has been lost and what can be gained, but sometimes you need medication too. I grew up taking medication for seizures. I had been on a variety of medications for various symptoms. I had to switch one for mood swings, and one for sleep. The one that caused insomnia, made it permanent and we had thought the sleep issues would resolve themselves. The sleep issues continued and we tried melatonin which helped for a while.
I eventually got off my seizure medication, but I had started on medication for anxiety and for sleep. I took melatonin and an antidepressant that helps with anxiety. I used these mediations helped me for about five years with minimal changes. I was doing great and I thought I was on top of the world. I of course had my days and times, but life was good. The "anxiety attacks" had been at bay for once. In January, my sleep got awful and we tried everything. Stuff would work for a week and then I would be back to no sleep again. We finally increased my melatonin intake, but I became resistant. I had to do something new.
I finally started taking something similar to Benedryl, but it was prescribed by a doctor as well as an increase in my anxiety meds. I made these changes on the same day I saw my neurologist for the possible seizure. I got the news that I had epilepsy right after I had visited my other doctor. Once again a new medication to try. Let's just say never change more than one medication at a time. This month has been a struggle of changes and side affects from medication as I adjust.
The medication that had caused the sleep insomnia (lamictal) was put back in my regimen for my seizures only because I didn't have the "episodes" while I was on this medication. I am convince that Lamictal permanently lost my good sleep due to this medication. I feel like it has also stolen other things now this time around and I fear they will not return.
As I said, I changed my anxiety medication at the same time as my seizure medications. the anxiety medication has a lot of side affects with mood and appetite. Sometimes I will feel very inattentive to things. Sometimes I have felt like I have had ADHD and I had to decrease my dosage. I finally tried increasing it again at the same time as my Lamictal. The lamictal can harm your attention span as well as it supresses stuff in the brain.
I am having trouble figuring out if my Lamictal or anxiety medication have been the cause of my attentiveness and processing. I feel like the Lamictal has stolen another important aspect of mental health. I am no longer able to focus on anything very long, so therefore even a task oriented job has its difficulties. Not only has this happened, but I am having trouble processing information. I have become loud and obnoxious, which was good because I was happier, but I have trouble with attention and now processing stuff. People will say stuff to me and I not only have to ask what, but I have to reiterate what they actually say. I also have always had trouble visually scanning for stuff, but now I literally can't find stuff without help. People at my one job are getting extremely frustrated with me and are just telling me I need to look harder. I can't help it and it frustrates me too. I notice it, but it has regressed quite quickly over the past month. I am really frustrated with my processing.
It really bothers me that not only do I notice these changes, but others do too and people just don't think I pay attention. I work hard each and everyday to make it through the day without mistakes, just like most people. I just have more humps to get over, but I can do it. I do on the other hand fear that this seizure that caused me to go on Lamictal is and angel and the lamictal is an agnel. Yes, the good angel and the bad angel. The seizures can cause issues and the lamictal can cause issues. Has this medication already done its damage this time around? Is this permanent? I feel lostas to what to do. I could risk having a grand mal seizure do to my history if i'm not not it, but I rarely have seizures. If I was to get off of this medication I don't know if I would return to my normal self. I am happy, but my attention and executive functioning have caused significant burdens.
For right now I just need to ride it out until I can talk to my doctor. If the lamictal has stolen these things, chances are they will never return as the sleep issues never got fixed. If it is the Lamictal it also isn't going to change more. I am stuck either way and this frustrates me. Over all I am fixated on this and I just shouldn't worry. I have to face whatever struggles that face me. If you can't deal with my processing issues, so be it. I try my best to make it through each day. I am happy and if I have trouble where I need to ask you about what I said, deal with it. I am using a strategy to help me. It only takes you a second. If its something I can't see, I know how to ask for help, but I do try hard. That only takes a minute to help with.
Let's face it, its a struggle for you and me both. I deal with it everyday, you mine as well do because I do.
The past month, I must admit has been the most trying month I've had in the past two years. I have had three medication changed within the past month including, stuff for anxiety, sleep and seizures. Fancy that, the things I talk about most. Its amazing what therapy can do to help you compensate for what has been lost and what can be gained, but sometimes you need medication too. I grew up taking medication for seizures. I had been on a variety of medications for various symptoms. I had to switch one for mood swings, and one for sleep. The one that caused insomnia, made it permanent and we had thought the sleep issues would resolve themselves. The sleep issues continued and we tried melatonin which helped for a while.
I eventually got off my seizure medication, but I had started on medication for anxiety and for sleep. I took melatonin and an antidepressant that helps with anxiety. I used these mediations helped me for about five years with minimal changes. I was doing great and I thought I was on top of the world. I of course had my days and times, but life was good. The "anxiety attacks" had been at bay for once. In January, my sleep got awful and we tried everything. Stuff would work for a week and then I would be back to no sleep again. We finally increased my melatonin intake, but I became resistant. I had to do something new.
I finally started taking something similar to Benedryl, but it was prescribed by a doctor as well as an increase in my anxiety meds. I made these changes on the same day I saw my neurologist for the possible seizure. I got the news that I had epilepsy right after I had visited my other doctor. Once again a new medication to try. Let's just say never change more than one medication at a time. This month has been a struggle of changes and side affects from medication as I adjust.
The medication that had caused the sleep insomnia (lamictal) was put back in my regimen for my seizures only because I didn't have the "episodes" while I was on this medication. I am convince that Lamictal permanently lost my good sleep due to this medication. I feel like it has also stolen other things now this time around and I fear they will not return.
As I said, I changed my anxiety medication at the same time as my seizure medications. the anxiety medication has a lot of side affects with mood and appetite. Sometimes I will feel very inattentive to things. Sometimes I have felt like I have had ADHD and I had to decrease my dosage. I finally tried increasing it again at the same time as my Lamictal. The lamictal can harm your attention span as well as it supresses stuff in the brain.
I am having trouble figuring out if my Lamictal or anxiety medication have been the cause of my attentiveness and processing. I feel like the Lamictal has stolen another important aspect of mental health. I am no longer able to focus on anything very long, so therefore even a task oriented job has its difficulties. Not only has this happened, but I am having trouble processing information. I have become loud and obnoxious, which was good because I was happier, but I have trouble with attention and now processing stuff. People will say stuff to me and I not only have to ask what, but I have to reiterate what they actually say. I also have always had trouble visually scanning for stuff, but now I literally can't find stuff without help. People at my one job are getting extremely frustrated with me and are just telling me I need to look harder. I can't help it and it frustrates me too. I notice it, but it has regressed quite quickly over the past month. I am really frustrated with my processing.
It really bothers me that not only do I notice these changes, but others do too and people just don't think I pay attention. I work hard each and everyday to make it through the day without mistakes, just like most people. I just have more humps to get over, but I can do it. I do on the other hand fear that this seizure that caused me to go on Lamictal is and angel and the lamictal is an agnel. Yes, the good angel and the bad angel. The seizures can cause issues and the lamictal can cause issues. Has this medication already done its damage this time around? Is this permanent? I feel lostas to what to do. I could risk having a grand mal seizure do to my history if i'm not not it, but I rarely have seizures. If I was to get off of this medication I don't know if I would return to my normal self. I am happy, but my attention and executive functioning have caused significant burdens.
For right now I just need to ride it out until I can talk to my doctor. If the lamictal has stolen these things, chances are they will never return as the sleep issues never got fixed. If it is the Lamictal it also isn't going to change more. I am stuck either way and this frustrates me. Over all I am fixated on this and I just shouldn't worry. I have to face whatever struggles that face me. If you can't deal with my processing issues, so be it. I try my best to make it through each day. I am happy and if I have trouble where I need to ask you about what I said, deal with it. I am using a strategy to help me. It only takes you a second. If its something I can't see, I know how to ask for help, but I do try hard. That only takes a minute to help with.
Let's face it, its a struggle for you and me both. I deal with it everyday, you mine as well do because I do.
Thursday, September 20, 2012
Q&A with J
The really stupid and PITA(pain in the ass) questions and statements I get from people about my issues
1. Q: Are you premature?
A: First off, you just asked me if I have ever had a seizure or a stroke. I am an honest person so I answered yes because I had a stroke when I was born and I have had seizures all my life. When I answered yes, you answered by saying, "yeah I saw that". First off, then why did you ask? Second, if you were asking me if I was premature, you should have already seen that no I wasn't because you knew I had a stroke and that was when I was born. That was actually within the first 24 hours after birth, so no I am not premature, but I do have a brain injury.
2. Q: Why are your eyes so bad?
A: First off!!! I don't know, your doctor. You tell me because you know a whole heck of a lot more about my eyes than I do. Anyway, why would I come see u if I was having a problem that I could figure out myself? Besides that, I just want to let you know that yes I did have a brain injury when I was born and I was put on oxygen in the hospital which could have caused the eye issues. Oh, and if you don't like that answer than figure it our yourself because I'm pretty sure you'd be famous if you did.
3. S: Your glasses are really thick!!!
A: Know really??? You also have a face!!! Honestly I have never said the above to people nor have I said this, but its all stuff I have though. The answer to this one came from someone who was in a wheelchair and had to give the response to someone when they stated she was in a wheelchair. I really liked it. lol and its so true. No pun intended
4. Q: so, that means that you fall on the floor and start convulsing?
A: No, how old are you? If you are a full grown adult you better well know that not every darn seizure ends in convulsions. I personally don't get those too frequently but I get episodic confusion or amnesia that have been diagnosed as seizures, but thank you for asking.
5. Q: What do I do if you have a seizure?
A: Well, first off I just repeated the answer to this question three times in a row. If I have one I am not going to convulse. I have a medical bracelet that tells you who to call. Don't call 911, its not an emergency unless I have a grand mal which won't happen. Take me for a walk and help me stay calm
6. Q: No, like what do I do if you have a seizure?
A: Above question has also been followed by the EMS are right across the street so do I pick you up and carry you to the elevator and take you to the EMS? It has also been followed by, no like do I stick a towel in your mouth so I don't swallow.
A: Really??? Where are you from and where have you been for the last 10 years. That's what old people ask. No if I say that you don't need to call 911, don't throw me over your shoulder and give me to the EMS. And no I don't swallow my tongue, nor does anyone. Its physically impossible. Take me for a walk and follow the instructions on my darn bracelet.
These are a few of the many stupid questions and statements I get on a DAILY basis that drive me insane.
1. Q: Are you premature?
A: First off, you just asked me if I have ever had a seizure or a stroke. I am an honest person so I answered yes because I had a stroke when I was born and I have had seizures all my life. When I answered yes, you answered by saying, "yeah I saw that". First off, then why did you ask? Second, if you were asking me if I was premature, you should have already seen that no I wasn't because you knew I had a stroke and that was when I was born. That was actually within the first 24 hours after birth, so no I am not premature, but I do have a brain injury.
2. Q: Why are your eyes so bad?
A: First off!!! I don't know, your doctor. You tell me because you know a whole heck of a lot more about my eyes than I do. Anyway, why would I come see u if I was having a problem that I could figure out myself? Besides that, I just want to let you know that yes I did have a brain injury when I was born and I was put on oxygen in the hospital which could have caused the eye issues. Oh, and if you don't like that answer than figure it our yourself because I'm pretty sure you'd be famous if you did.
3. S: Your glasses are really thick!!!
A: Know really??? You also have a face!!! Honestly I have never said the above to people nor have I said this, but its all stuff I have though. The answer to this one came from someone who was in a wheelchair and had to give the response to someone when they stated she was in a wheelchair. I really liked it. lol and its so true. No pun intended
4. Q: so, that means that you fall on the floor and start convulsing?
A: No, how old are you? If you are a full grown adult you better well know that not every darn seizure ends in convulsions. I personally don't get those too frequently but I get episodic confusion or amnesia that have been diagnosed as seizures, but thank you for asking.
5. Q: What do I do if you have a seizure?
A: Well, first off I just repeated the answer to this question three times in a row. If I have one I am not going to convulse. I have a medical bracelet that tells you who to call. Don't call 911, its not an emergency unless I have a grand mal which won't happen. Take me for a walk and help me stay calm
6. Q: No, like what do I do if you have a seizure?
A: Above question has also been followed by the EMS are right across the street so do I pick you up and carry you to the elevator and take you to the EMS? It has also been followed by, no like do I stick a towel in your mouth so I don't swallow.
A: Really??? Where are you from and where have you been for the last 10 years. That's what old people ask. No if I say that you don't need to call 911, don't throw me over your shoulder and give me to the EMS. And no I don't swallow my tongue, nor does anyone. Its physically impossible. Take me for a walk and follow the instructions on my darn bracelet.
These are a few of the many stupid questions and statements I get on a DAILY basis that drive me insane.
Monday, September 17, 2012
The Magic Box
On Friday, I headed out the door to class first thing in the morning. I had my wallet, my final draft of my essay that i needed to turn in, and a drawstring back hanging from my back to carry it all. I was ready to tackle the day. I had planned on staying on campus until 3. I went to class, took out what I needed including my paper, pencils, textbook and a notebook just in case. I had everything i needed. I finished up class without a problem. I got my next assignment and was pleasantly surprised with how comfortable I felt about it compared to the last assignment. I listened to the teacher, took notes and headed on my way to my mentoring.
I arrive at my mentoring location an hour ahead of time each day due to my schedule. I have class until 9 and then I don't mentor until 10:10 which is fine and gives me plenty of time to study and read textbooks. When I study, I respectfully hide out in the hall way until it is time to pick my student up. I change my clothes and then we head off to the gym. On friday I come into the classroom an work with a student on schoolwork in the classroom. I went in at 10 on friday to start working with the student. I walked in and said I was ready. They got a little busy and were behind in other stuff, so I had a huge break before my next task at hand.
I looked at my schedule and realized I had three hours to waist. That is way too much time to hang out on campus with not a whole lot to do other than study. I made a few phone calls, thought about taking a bus home or back on to campus. I decided to call my mother to convince her to come get me since the bus schedules did match up and I had three hours to waist. She called my father and he came to get me. I came home and hung out for a while. My mom decided to take me our for lunch. We went out to lunch with my1cent, took me to the creamery and I went to my support group from there. My1cent and my mom went back to work and my mom picked me up at three. In the end everything worked out in terms of scheduling. Its still definitely something we need to work on, but we're doing okay.
When my mom took me home, I was absolutely exhausted from the day. I felt like I was running around everywhere and I could you really blame me. I was intensely socially active for a good hour and a half. Of course it was good socializing, but its also hard and demanding. Don't get me wrong, I love to socialize, but its hard. I came home took my shoes of and I automatically went to my computer to relax. My mom came in the door, and was completely surprised by what she saw. Ooh what did she see?
Now lets back track a little bit here. Since I have been up on campus, I have seen a ton of Vera Bradley backpacks. I am always trying to fit in and if I can't fit in one way, I can always try to fit in another way. I went to my parents and asked them about this wonderful backpack. They thought about buying purely for me to fit in, but in the end I used my own money so that I didn't have to carry around that darn drawstring bag.
Okay, lets now go forward a little bit. I got home from the support group on friday, took off my shoes and went to relax. Shortly after, I sat down to relax, my mother came in the door and was surprised by what she saw right in front of her; it was a giant box. I giant box that unbeknownst to me, was a gift I had been waiting for. My mother called me out into the foyer to see what was there. I took the giant box over to the table and opened it. The picture above is what I saw: a vera bradley backpack with a laptop case embedded.
I swear the box that was carrying my backpack vanished and reappeared. My1cent purposely put the box right in the middle of the floor and I still walked over it. The typical person wouldn't have been able to miss it. In face they probably would've fallen over it: literally. My1cent threatened to hang my next package from the ceiling like a pinata to see if that would help. I do have to say that there is a huge lesson that can be learned from this situation.
The lesson that is being learned from this situation is that I don't get the whole picture. Sometimes I wonder how much of reality I actually process. I learned in anatomy and physiology we don't perceive our world accurately. They gave several examples of visual illusions to show us this. Stuff that the typical person can pick up is even more than what I can pick up. I can't imagine how skewed my images are, but they are normal. I am able to function just like everyone else as long as I am able to process everything. This is why I can't drive. If that box was a car, I would be dead by now. I probably would have swerved off the road by the end.
Let me just end by saying that some day I am going to be famous for creating the theory that autism is not a communication disorder, but a processing disorder of sensory information that affects our ability to use our communication skills in an appropriate way. If you thought the sound of a voice sounded like a siren, I'm sure you would have a full blown tantrum like a two year old too.
I arrive at my mentoring location an hour ahead of time each day due to my schedule. I have class until 9 and then I don't mentor until 10:10 which is fine and gives me plenty of time to study and read textbooks. When I study, I respectfully hide out in the hall way until it is time to pick my student up. I change my clothes and then we head off to the gym. On friday I come into the classroom an work with a student on schoolwork in the classroom. I went in at 10 on friday to start working with the student. I walked in and said I was ready. They got a little busy and were behind in other stuff, so I had a huge break before my next task at hand.
I looked at my schedule and realized I had three hours to waist. That is way too much time to hang out on campus with not a whole lot to do other than study. I made a few phone calls, thought about taking a bus home or back on to campus. I decided to call my mother to convince her to come get me since the bus schedules did match up and I had three hours to waist. She called my father and he came to get me. I came home and hung out for a while. My mom decided to take me our for lunch. We went out to lunch with my1cent, took me to the creamery and I went to my support group from there. My1cent and my mom went back to work and my mom picked me up at three. In the end everything worked out in terms of scheduling. Its still definitely something we need to work on, but we're doing okay.
When my mom took me home, I was absolutely exhausted from the day. I felt like I was running around everywhere and I could you really blame me. I was intensely socially active for a good hour and a half. Of course it was good socializing, but its also hard and demanding. Don't get me wrong, I love to socialize, but its hard. I came home took my shoes of and I automatically went to my computer to relax. My mom came in the door, and was completely surprised by what she saw. Ooh what did she see?
Now lets back track a little bit here. Since I have been up on campus, I have seen a ton of Vera Bradley backpacks. I am always trying to fit in and if I can't fit in one way, I can always try to fit in another way. I went to my parents and asked them about this wonderful backpack. They thought about buying purely for me to fit in, but in the end I used my own money so that I didn't have to carry around that darn drawstring bag.
Okay, lets now go forward a little bit. I got home from the support group on friday, took off my shoes and went to relax. Shortly after, I sat down to relax, my mother came in the door and was surprised by what she saw right in front of her; it was a giant box. I giant box that unbeknownst to me, was a gift I had been waiting for. My mother called me out into the foyer to see what was there. I took the giant box over to the table and opened it. The picture above is what I saw: a vera bradley backpack with a laptop case embedded.
I swear the box that was carrying my backpack vanished and reappeared. My1cent purposely put the box right in the middle of the floor and I still walked over it. The typical person wouldn't have been able to miss it. In face they probably would've fallen over it: literally. My1cent threatened to hang my next package from the ceiling like a pinata to see if that would help. I do have to say that there is a huge lesson that can be learned from this situation.
The lesson that is being learned from this situation is that I don't get the whole picture. Sometimes I wonder how much of reality I actually process. I learned in anatomy and physiology we don't perceive our world accurately. They gave several examples of visual illusions to show us this. Stuff that the typical person can pick up is even more than what I can pick up. I can't imagine how skewed my images are, but they are normal. I am able to function just like everyone else as long as I am able to process everything. This is why I can't drive. If that box was a car, I would be dead by now. I probably would have swerved off the road by the end.
Let me just end by saying that some day I am going to be famous for creating the theory that autism is not a communication disorder, but a processing disorder of sensory information that affects our ability to use our communication skills in an appropriate way. If you thought the sound of a voice sounded like a siren, I'm sure you would have a full blown tantrum like a two year old too.
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