Well, today was the day!!! I finally had the long awaited doctor's appointment with the optometrist with some good news and some not so good news. I pretty much spent the whole afternoon there trapped in an exam room with my mother or an assistant. That was fun, but more on that later.
When I was born, I had some complications that resulted in a mini stroke. I was lifeflighted and I stayed in a NICU for a week. It was only a week, but I was on oxygen for a couple of days. I have been going to see the same eye doctor for some time now, but the assistant decided to interrogate (in a good way) about what could have caused my vision to be so bad!!! None of the answers we gave her seemed add up.
I came in at 1:30 this afternoon and got checked in. Shortly after that I was taken back for the run of the mill pre-exam tests such as the air puff for glaucoma. I was then given to a new assistant who put me in a room where there was a white dome I looked in. I had to click a button every time I saw a light flash. That took about 15 minutes and then they went to get my mom so we could wait in a PRIVATE waiting area and be let into an exam room where we would wait another 20 minutes!!! NO JOKE!!! The exam took all of five minutes where she decided that my eyes only changed a 1/2 diopter and a 3/4 diopter ( a measurement for determining your prescription strength).
During the regular exam where they showed me a bunch of different letters to see how well I could see, my doctor put this rather odd looking thing onto the exam machine. I asked her what it was and are you ready for her reply? "I am going to implant this and you will become a unicorn, if you believe me, I can tell you more stories." My mom and just about cracked up. I guess I am a unicorn and the thing they put on the machine kind of looked like a horn. It was quite humorous in a stressful situation.
My doctor then proceeded to dilate my eyes. She gave me the tissues and that was it. She was ready to apply THE DROPS!!! I told her I needed to lay down and that she could create a pool of drops that she would massage in. That tends to help me more and out the door she went.
Earlier in the day I had reported to the assistant that I had a floater in the eye that I was at risk for retinal detachment. The good news is that I don't have a retina detachment, but I have a floater the size of the USS Enterprise as she said. It was kind of funny when she was looking at my eye. She was say stuff like, "oh there it goes, with that little tail." It is so weird how this thing essentially swims around up there. I have officially named it bob and he will live there until he multiplies and then settles into a sediment in the bottom of my eye.
I finally was let free when I was taken into the waiting room where you can browse the glasses frame. I felt like we were really let loose because we had no idea what to do. lol. Fortunately the assistant that normally helps us get frames recognized us and helped us when she was done with her previous client. Let me tell you what, I can't wait to get the glasses because they are pretty much totally j!!!
Along with getting a new pair of glasses, my doctor decided to finally discuss surgical options with us. Due to my age and my vision, I qualify for one eye to be fixed, but not the other. The procedure is minimally invasive and is only done with local sedation. Ouch!!! They will only do the surgery bilaterally which means that they want to wait until both eyes qualify instead of doing them unilaterally or by themselves. I have to have both my eyes within a half a diopter change for 12 to 24 months before I can get the surgery. My one eye is between 1/2 and 3/4. So Close!!! They want to do a lensectomy which is essentially the same thing they do for cataracts, but they will give me a lens that is fit to my glasses prescription and then I will wear a pair of glasses 1/10 the strength I wear now. Eventually I will then get lasik to correct the rest!!! If you know me this is a near miracle considering how thick my glasses are.
My doctor is contacting my other eye doctor to get his last report to see was the next immediate step is if any. I am opting out of the muscle surgery I had ten years ago as it is cosmetic and has some risky side affects that I have already experienced and still live with from the previous surgery. Please just HOPE!!!
Dickinson Mental Health Charity Ball
Monday, January 30, 2012
Sunday, January 22, 2012
A Black Friday Nightmare
Remember last Thanksgiving dinner, your whole family sitting around the dinner table chowing down on turkey, mashed potatoes and gravy. The women, or men clean up at the end of the dinner, you eat pumpkin pie for dessert and the men watch football. Thats how my family works at least. Next remember that afternoon or evening when the girls sit around looking at black friday ads; this is not our family. Now close your eyes and picture those ads; an amazing price, beautiful picture and something you just got to have. Wait there is fine print though. Of course there is fine print. Those little details that count that the stores don't want to tell you about; the batteries are not included. Now picture that ad being to buy autism. Well, I want to say now that autism has turned into a black friday ad and I am not happy about it.
When you look at a black friday ad, you see the picture and title of the item as well as the price, details and the fine print, maybe. When you read articles about autism you see the diagnosis' which I see as the item, who is involved in treating and diagnosing it, the price and the requirements for a diagnosis, the description of the item. THERE IS NO FINE PRINT!!!! Thats a problem. There is nothing about personality, intelligence or speech. There is nothing about what causes it, but inside the doctors are hiding facts that may cause many of us to be uspet, such as me.
It will be three years in May since I have been diagnosed with autism!!! Yes, I said autism because I have aspergers, a mild for of AUTISM. Around this time or maybe shortly after, the news started talking about the possible change that will eliminate all diagnosis' from the diagnostic and statistical manual for mental disorders: DSM for short. When this came out and when I was diagnosed, I just knew that I would eventually have autism, not aspergers and that there would be more understanding and the same treatments. Today that is not the case. Its like the political campaign. The individuals running for office share with you true facts and their beliefs, but they don't give you the details until they have been voted into office by you!!!
This past semester I took a public speaking class. We were to come up with three speeches all about the same thing. There was a problem speech, a policy speech and a motivational speech. I did mine on the change in the autism diagnosis. I was against the change a little bit until I did a little research. I then took the facts and was for the change. Now I regret everything I preached about last semester during my class. Before, this year, 2012, I was kind of in a mix. This year, the APA finally came out with their real news that could change the lives of many.
If you have not been in the special needs community, you may not know much about the rise in autism diagnosis', but its a problem and doctors aren't sure what to make of it. No matter what they can't seem to figure out why its rising. Well, about a month ago, I read an article about people finding those missing individuals with autism who are actually unaccounted for. People always ask where all the adults with autism are; they are all in mental institutions with a schizophrenic diagnosis. One case was reported to have been diagnosed by Leo Kanner, the founder of autism and then dismissed to the institution where all disabled individuals were told to go. He was then labeled with schizophrenia even though he had autism.
Even though autism is on the rise, so are other diagnosis' such as ADHD, but we focus more on autism. If you have ever heard the phrase, "keep talking, I am diagnosing you" that is what some doctors are doing, but once we get help we don't want to let go of it. If I lose my autism diagnosis, chances are I will be diagnosed with my pre-existing anxiety disorder, ocd, and adhd. I have obsessive compulsive issues that have been claimed as part of my autism. I have been told by one doctor that it looked like I had adhd, but he felt insecure treating me for it. What will I do with out this diagnosis???
I am going to be going off to college soon. They are just developing programs for individuals with autism. They are developing programs to help with studying and living independently. Therapist know how to treat people diagnosed with aspergers because treatment is similar to that of autism and it works. 1 in 3 individuals with aspergers or autism are able to go to college. If we just wait 10 years, even more will be going to college and living fulfilling lives. If we change the diagnostic criteria, it will add another negative side to autism which already has too many negative sides. Things were just starting to change for individuals with autism. Now they are spiraling downward.
I am sorry for the rant, but I feel for this case!!! Changing the name of something is okay, but changing the criteria after so many have been diagnosed is not. I AM AUTISTIC AND PROUD OF IT!!! PLEASE HELP THIS CHANGE!!!! :(
When you look at a black friday ad, you see the picture and title of the item as well as the price, details and the fine print, maybe. When you read articles about autism you see the diagnosis' which I see as the item, who is involved in treating and diagnosing it, the price and the requirements for a diagnosis, the description of the item. THERE IS NO FINE PRINT!!!! Thats a problem. There is nothing about personality, intelligence or speech. There is nothing about what causes it, but inside the doctors are hiding facts that may cause many of us to be uspet, such as me.
It will be three years in May since I have been diagnosed with autism!!! Yes, I said autism because I have aspergers, a mild for of AUTISM. Around this time or maybe shortly after, the news started talking about the possible change that will eliminate all diagnosis' from the diagnostic and statistical manual for mental disorders: DSM for short. When this came out and when I was diagnosed, I just knew that I would eventually have autism, not aspergers and that there would be more understanding and the same treatments. Today that is not the case. Its like the political campaign. The individuals running for office share with you true facts and their beliefs, but they don't give you the details until they have been voted into office by you!!!
This past semester I took a public speaking class. We were to come up with three speeches all about the same thing. There was a problem speech, a policy speech and a motivational speech. I did mine on the change in the autism diagnosis. I was against the change a little bit until I did a little research. I then took the facts and was for the change. Now I regret everything I preached about last semester during my class. Before, this year, 2012, I was kind of in a mix. This year, the APA finally came out with their real news that could change the lives of many.
If you have not been in the special needs community, you may not know much about the rise in autism diagnosis', but its a problem and doctors aren't sure what to make of it. No matter what they can't seem to figure out why its rising. Well, about a month ago, I read an article about people finding those missing individuals with autism who are actually unaccounted for. People always ask where all the adults with autism are; they are all in mental institutions with a schizophrenic diagnosis. One case was reported to have been diagnosed by Leo Kanner, the founder of autism and then dismissed to the institution where all disabled individuals were told to go. He was then labeled with schizophrenia even though he had autism.
Even though autism is on the rise, so are other diagnosis' such as ADHD, but we focus more on autism. If you have ever heard the phrase, "keep talking, I am diagnosing you" that is what some doctors are doing, but once we get help we don't want to let go of it. If I lose my autism diagnosis, chances are I will be diagnosed with my pre-existing anxiety disorder, ocd, and adhd. I have obsessive compulsive issues that have been claimed as part of my autism. I have been told by one doctor that it looked like I had adhd, but he felt insecure treating me for it. What will I do with out this diagnosis???
I am going to be going off to college soon. They are just developing programs for individuals with autism. They are developing programs to help with studying and living independently. Therapist know how to treat people diagnosed with aspergers because treatment is similar to that of autism and it works. 1 in 3 individuals with aspergers or autism are able to go to college. If we just wait 10 years, even more will be going to college and living fulfilling lives. If we change the diagnostic criteria, it will add another negative side to autism which already has too many negative sides. Things were just starting to change for individuals with autism. Now they are spiraling downward.
I am sorry for the rant, but I feel for this case!!! Changing the name of something is okay, but changing the criteria after so many have been diagnosed is not. I AM AUTISTIC AND PROUD OF IT!!! PLEASE HELP THIS CHANGE!!!! :(
Monday, January 16, 2012
I need some sssss'z
Well, the last week has been a week of trial and error. When I was in seventh grade, i hit the peak for my sensory issues. I was the most sensitive about sounds. I would throw a complete temper tantrum if I heard a siren. At this same time, I started to have trouble sleeping, which I continue to have today with the help of the all natural melatonin. This week has been a week of trial and error. I need my sss'z. My sss'z are my sleep and my sensory needs.
Last week, I had a really bad night and at about 4 o'clock in the morning I had absolutely had it!!! I talked to my mom and said that something needed to be done. We called the doc and he raised my melatonin level. I am now on a fairly high and its helping a little bit, but not to the extent that I would like. This week I have been trying several things. For a couple of nights I tried the new dosage. Two nights ago I tried switching beds with my parents and last night I added a heavy blanket to my bed.
After much experimenting I think I know the trick. My sleep troubles are not due to one factor, but due to many factors. I am surprised it has taken me this long to figure them out. I have sensory issues even when I sleep. I hate that people say that an individual with autism is either sensory seeking or avoiding. Thats not how it is at all. I am sensory avoiding to noise and sensory seeking to texture. I hate sirens, thunderstorms, crowds and unfamiliar places. I love hugs, roller coasters, trampolines and obviously now heavy blankets.
My sleep habits have been driving me nuts, but now I think I know what I need to do. I slept with a heavy blanket last night, but I was too hot. I love to wear fleece pajamas year round, but I think that is going to have to come to an end if I want to sleep and not put my family through misery. I wore those fleece pajamas with my sheets, comforter and a huge fleece blanket last night. Tonight I am going to take the melatonin and sleep in summer pajamas with the big blanket to see if that helps. If that doesn't I think I might go insane, or just try benadryl as the doctor told me too.
Lets just see if I can convince my mom I need a weighted blanket now!!! :)
Last week, I had a really bad night and at about 4 o'clock in the morning I had absolutely had it!!! I talked to my mom and said that something needed to be done. We called the doc and he raised my melatonin level. I am now on a fairly high and its helping a little bit, but not to the extent that I would like. This week I have been trying several things. For a couple of nights I tried the new dosage. Two nights ago I tried switching beds with my parents and last night I added a heavy blanket to my bed.
After much experimenting I think I know the trick. My sleep troubles are not due to one factor, but due to many factors. I am surprised it has taken me this long to figure them out. I have sensory issues even when I sleep. I hate that people say that an individual with autism is either sensory seeking or avoiding. Thats not how it is at all. I am sensory avoiding to noise and sensory seeking to texture. I hate sirens, thunderstorms, crowds and unfamiliar places. I love hugs, roller coasters, trampolines and obviously now heavy blankets.
My sleep habits have been driving me nuts, but now I think I know what I need to do. I slept with a heavy blanket last night, but I was too hot. I love to wear fleece pajamas year round, but I think that is going to have to come to an end if I want to sleep and not put my family through misery. I wore those fleece pajamas with my sheets, comforter and a huge fleece blanket last night. Tonight I am going to take the melatonin and sleep in summer pajamas with the big blanket to see if that helps. If that doesn't I think I might go insane, or just try benadryl as the doctor told me too.
Lets just see if I can convince my mom I need a weighted blanket now!!! :)
Monday, January 9, 2012
Vicki's Back!!!
This blog is hopefully going to be humorous or at least happy. Let me start off by saying that per Vicki's request, I named my entry Vicki's back. I have also had a great start to the new semester with a great schedule, great people and an eventful semester. The only problem today was that I already lost my zebra hat!!! :(
As you can see, I am in a very good mood tonight and today went very well. Today was my first day back to classes and I have quite an eventful, but good schedule. This semester I am taking three classes on monday and wednesday. I will have a book club on tuesdays and thursdays and friday I have psychology. I have some good classes and I have more independence which I am very proud of.
Today was a great day with some new challenges. As I go along my journey to college, I will run into new challenges that will build me up. Today, I had to go to a class all by myself with the assistance of navigating campus from a mentor. On wednesday, I will be navigating campus on my own, taking my own notes and doing some of my own studying. Last semester, my classes were all supervised and I had assistance with everything. I was walked to class, had help with notes and keeping track of assignments. this semester its my job.
Along with new found independence, I have also found past friends, mentors and peers to greet me on this new journey. We have four interns this semester and Vicki is one of them. I was thrilled to be sitting in the quiet hall oust side my classroom where I had room to do my thing, but was where I needed to be if someone wanted something. I was sitting there quietly studying when a previous mentor came up just to say hi to me. It about made my day. It was great having independence and people I actually knew that cared enough about me to reconnect.
Well, Vicki is back and she is back with a vengeance. Last semester, I met a wonderful lady named Vicki. She was a mentor and and someone I grew close to. This semester, she decided to come back full force and be an intern in our classroom. Vicki, in case you are wondering is the one who has their hands on my shoulders in the picture posted above. Let me tell you, when Vicki left in the fall, she wasn't going to leave me with out me giving her a hard time. She is very glad to be back and so am I.
One last story of the day. I came into school very spacey, but I was greeted by some very familiar faces which made me warm up a little and become a little more alert. I wasn't quite sure what was wrong, but something was. I was met by a mentor from last semester first thing in the morning. These mentors aren't obligated to come and hang out with us, but they do it anyway. I was greeted by a mentor who later took me to class. I was so happy to see all these familiar faces and to have great classes.
Here is to a new semester!!!
As you can see, I am in a very good mood tonight and today went very well. Today was my first day back to classes and I have quite an eventful, but good schedule. This semester I am taking three classes on monday and wednesday. I will have a book club on tuesdays and thursdays and friday I have psychology. I have some good classes and I have more independence which I am very proud of.
Today was a great day with some new challenges. As I go along my journey to college, I will run into new challenges that will build me up. Today, I had to go to a class all by myself with the assistance of navigating campus from a mentor. On wednesday, I will be navigating campus on my own, taking my own notes and doing some of my own studying. Last semester, my classes were all supervised and I had assistance with everything. I was walked to class, had help with notes and keeping track of assignments. this semester its my job.
Along with new found independence, I have also found past friends, mentors and peers to greet me on this new journey. We have four interns this semester and Vicki is one of them. I was thrilled to be sitting in the quiet hall oust side my classroom where I had room to do my thing, but was where I needed to be if someone wanted something. I was sitting there quietly studying when a previous mentor came up just to say hi to me. It about made my day. It was great having independence and people I actually knew that cared enough about me to reconnect.
Well, Vicki is back and she is back with a vengeance. Last semester, I met a wonderful lady named Vicki. She was a mentor and and someone I grew close to. This semester, she decided to come back full force and be an intern in our classroom. Vicki, in case you are wondering is the one who has their hands on my shoulders in the picture posted above. Let me tell you, when Vicki left in the fall, she wasn't going to leave me with out me giving her a hard time. She is very glad to be back and so am I.
One last story of the day. I came into school very spacey, but I was greeted by some very familiar faces which made me warm up a little and become a little more alert. I wasn't quite sure what was wrong, but something was. I was met by a mentor from last semester first thing in the morning. These mentors aren't obligated to come and hang out with us, but they do it anyway. I was greeted by a mentor who later took me to class. I was so happy to see all these familiar faces and to have great classes.
Here is to a new semester!!!
Thursday, January 5, 2012
A Musical Society and a Glass Wall
People have always told me that you have to have things in common with others to make friends. Psychologists have told me to make a diagram or what ever those two-circled things are to decide who I should try being friends with, but sometimes it just doesn't work, but I feel that I have a large bank of interests. Lately, I have noticed what the problem is. There is a glass wall between me and the neurotypicals in this musical society we call our world and social life.
People with aspergers are fact based people. I have always been told that I am very good with facts and I like that I am good with facts because it helps with study skills, but it doesn't help with relationships. Temple Grandin has said that her brain is a tape recorder. She thinks in pictures and has memorized phrases. I'm kind of feeling the same way right now despite the fact that I am an auditory learner, not a visual learner. A conversation has flows, not facts. Instead of commenting on something or asking a question, i give a straight fact that puts an abrupt end to the conversation.
Today was a great example. My mom has a new employee who many of you have heard me call her my1cent. I spent the day with her while the rest of the family was out and about. We went to the store and got sweet teas. She was my taxi driver for the day too!!! Thank you my1cent. I knew I was using my tape recorder when I talked to her. We have the same conversations all the time. My vocabulary with her consists of the following phrases.
How's Tim?
Finn?
Asher?
Bailey?
Dreu and Piper?
Can we get a sweet tea?
Does finn have a game tonight?
Can I have a hug?
Can Finn come over?
Can I come over?
or anything regarding buffalo chicken dip or sock monkeys
As you can see, I have a limited access to social conversation. I do have atypical aspergers though, so sometimes people may not even know that i am different. I have tons of personality and tons of flexion in my tone of voice. Conversations are shorter and less monopolized than what I can do. I am not saying I can't do this, but I have a glass wall in my way. I feel like I am so close to normal society, but there is this translucent wall between me and society. No one can see it, but I can feel it. I say something and I automatically hit a wall. I try to socialize, but I either give a fact or talk about myself.
here's another example. A dad is taking his son to school. He asks his son how he slept. His sons reply is good, did you know its 34 degrees outside? How is the person supposed to reply. I want to socialize and I am almost there, but there is literally a limited connection to the other world. I am starting to feel that I am in the autism word and trying to communicate with my peers. I even feel like this with my mom.
My tape recorder for mom
How's my1cent today?
Whats for dinner?
Can I cuddle?
I can't wait to get my eyes checked I wish they were normal
I hate aspergers
Whats the game plan for today?
Can we go shopping?
Can we go to the movie?
I have these little tape recorders in my head and there is a class wall prohibiting me from moving forward. The one thing I know I can work on is my interrupting though. Honestly, how do I communicating in a musical society. conversations flow like music and I am that beat that is off or the person that forgot the words to the piece and makes something up. I guess that would be good if I was an actor, but its not too cool when you are socializing.
People with aspergers are fact based people. I have always been told that I am very good with facts and I like that I am good with facts because it helps with study skills, but it doesn't help with relationships. Temple Grandin has said that her brain is a tape recorder. She thinks in pictures and has memorized phrases. I'm kind of feeling the same way right now despite the fact that I am an auditory learner, not a visual learner. A conversation has flows, not facts. Instead of commenting on something or asking a question, i give a straight fact that puts an abrupt end to the conversation.
Today was a great example. My mom has a new employee who many of you have heard me call her my1cent. I spent the day with her while the rest of the family was out and about. We went to the store and got sweet teas. She was my taxi driver for the day too!!! Thank you my1cent. I knew I was using my tape recorder when I talked to her. We have the same conversations all the time. My vocabulary with her consists of the following phrases.
How's Tim?
Finn?
Asher?
Bailey?
Dreu and Piper?
Can we get a sweet tea?
Does finn have a game tonight?
Can I have a hug?
Can Finn come over?
Can I come over?
or anything regarding buffalo chicken dip or sock monkeys
As you can see, I have a limited access to social conversation. I do have atypical aspergers though, so sometimes people may not even know that i am different. I have tons of personality and tons of flexion in my tone of voice. Conversations are shorter and less monopolized than what I can do. I am not saying I can't do this, but I have a glass wall in my way. I feel like I am so close to normal society, but there is this translucent wall between me and society. No one can see it, but I can feel it. I say something and I automatically hit a wall. I try to socialize, but I either give a fact or talk about myself.
here's another example. A dad is taking his son to school. He asks his son how he slept. His sons reply is good, did you know its 34 degrees outside? How is the person supposed to reply. I want to socialize and I am almost there, but there is literally a limited connection to the other world. I am starting to feel that I am in the autism word and trying to communicate with my peers. I even feel like this with my mom.
My tape recorder for mom
How's my1cent today?
Whats for dinner?
Can I cuddle?
I can't wait to get my eyes checked I wish they were normal
I hate aspergers
Whats the game plan for today?
Can we go shopping?
Can we go to the movie?
I have these little tape recorders in my head and there is a class wall prohibiting me from moving forward. The one thing I know I can work on is my interrupting though. Honestly, how do I communicating in a musical society. conversations flow like music and I am that beat that is off or the person that forgot the words to the piece and makes something up. I guess that would be good if I was an actor, but its not too cool when you are socializing.
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