It's been a while

A lot happened in 2008 but it's 2009 now. I've been neglecting this blog because I've been so busy doing other things. I attended the Y.O Disabled and Proud Conference in March, in Anaheim, California. I did not return to YLF this summer because I started college classes to make up my high school credits. I'm starting a Kurzweil class tomorrow. I took an art history class earlier this summer and got an A. College has been such a great experience; I am so much more free than in high school. I was having a lot of problems with the high school I was attending last year. An incident happened in which I was given an attendance contract and was told to sign. I refused on the basis of the fact that as a student with a disability, I have the right to take it home and bring it back signed. This teacher told me I was being defiant and told me to leave the class. I was disciplined unfairly and put in in-school suspension. I was completely within my rights. I was also having many other problems at the school including inaccessibility to the restroom. I do have hemiparaplegic in the condition I have in which one side of my body does not work as well as the other. I cannot use a push down faucet. When I told the principal about this I asked to use the teacher's restroom. He said yes that's fine no problem. But a few months later, after coming back from winter break, I was denied access to the restroom. A security guard told the very same teacher that I was not permitted to use the restroom. Later about three weeks before school was to let out I discovered that the principal was told that I was listening to my iPod in the teacher's restroom. Which was a complete lie and when I told him, he claimed it was a misunderstanding. By the end of the school year I was completely fed up with all these "misunderstandings" and decided to report the school to the Office of Civil Rights, an organization that acts as a third party, it investigates complaints and tries to negotiate with the school districts into changing whatever the complaint was about. The school I attended was also doing something illegal with the California High School Exit Exam. The case is currently being investigated and I will tell you the result when I find out. The last I heard, the school was looking over the complaint with their lawyers. The worst that can come out of this is that the school loses its federal funding. I honestly wish it hadn't come to this but they should be following the law. As a result of this I am trying to transfer to another district. The problem is this recession we're in. The school district is saying that they are so impacted with special education students that they cannot allow me in. My case is that the school I attended previously did not offer online courses, did not follow regulations, and the fact that the school I'm trying to transfer to another district has had the most experience of any school I can find with students with disabilities. Because my condition I cannot walk far, which is an issue because campuses tend to be very spread out and this high school is not. It is one building with three floors and portables. It also has sports equipment and courts/ fields but I can't use it, making it irrelevant to me. I'm in desperate need of a transfer and am looking towards local government and also writing letters to other politicians in higher office. Two days ago was the 19th anniversary of the Americans with Disabilities Act. We have come along way but there is still a lot we need to do. In California we are in a gigantic deficit. Our governor is cutting programs for disabilities left in right. He is also cutting funding to schools. We got rid of Gov. Gray Davis because of the same problem we are encountering now. Actually the problem is worse now.

Quick rap of the week

Wow this week has been amazing. Tuesday we elected Barack Obama as the 44th president of The United States! Unfortunately I've been sick this week. But I did take the CAHSEE (California High School Exit Exam) which is unfair to people with disabilities. In California it is a graduation requirement. If you use any kind of accommodation they mark you as M for moderate, which is technically not passing. Even if you pass the test you really don't pass because you've used an accommodation. It is unfair that the person who used a scribe is marked M or someone who writes their essay on a computer. This is completely unacceptable. How do we fix this problem? We write letter to our legislatures. I plan to start a petition to get rid of the CAHSEE altogether. I will post the link as soon as I make it.  As for the disability vote: there's 54 million people with disabilities in the U.S and only 3% of us vote! We need to change that immediately. Please visit this site:
http://www.thenthdegree.com/disabilityvote.asp 
to order shirts and spread the message! "If you don't vote you don't count."-Veron Damher These words are very true. There is a program in Minnesota that is letting youth with disabilities help voting.

Please check it out:
http://www.myvoicemyvote.org/

grammar help from my friend Mimi

Personal Life

Personal Life

As a cancer survivor you learn the value of love and the acceptance of people who truly care. In Lance Armstrong’s words “Ordinary moments become extraordinary” And its true. As a child I was very outgoing talked to everyone. To the point of getting on someone’s nerves. I trusted people to much. I loved to talk. And I rarely listened. I told everyone my business and it came back to haunt me. After I go sick I realized people couldn’t be trusted. That humanity sucked and that I could trust no one with anything. How I was feeling. I didn’t know who my friends were. I was lost. And I couldn’t talk about why. Being 60 pounds n having very short hair isn’t the most attractive things in the world. I had just entered a public middle school. Boys didn’t ever look at me. I had many crushes of course. But none showed interest in me. It wasn’t until earlier this year. Until last year that a boy found interest in me. I met him at a party. I was feeling upset n lonely during the party. I sat next to him noticed that he didn’t know anybody either. So We started talking. Maybe subconiously I trusted him? I told him my story. And he didn’t go away. It was werid he cared, truly cared. We parted that night. He had given me his deviant art account. So I chcked it out. He was really good. I tried his email. It didn’t work. I was sent a failure notice. So I thought maybe his email was wrong. The friend who had the party where we met. Has a cabin and he gave her his emal to give to me. Let’s call her Beth. Beth gave it to me and I was shocked. I wondered why he would remember me? I wasn’t anything special especially the night he met me. I was werid I was happy but very very surprise. I asked Beth “He remember me?” And the look on her face was hilarious. And was said “Yes really.” So I tried a different email and it worked! We email for a few months n decided to meet up. And the rest is history. We’ve been together for 6 months. And the most important thing, the most remarkable is that he accepts me. He loves me. And its rare. I’m 17 and in love. Being in a relationship like ours. With passion, acceptance, and compassion happens to people n their 30’s if they’re lucky enough.

Assistive Software

I recently was given a MacBook by the San Carlos and Belmont Optimist Club. And I waned to give special thanks. And also to let people know about the great programs that are Mac Compatible.  Kursweil a program that scans books, tracks, and reads them to you. It is a great program. That’s helped me a lot. With my tracking problem in the past. I did a speech about 2 weeks ago to the club. Telling them my story and asking them to please buy me a laptop. During my second and last year at the private school I found out about Kursweil and it changed the way I was able to understand things. My eyes have a very difficult time tracking since I lost the left side of my vision. I went from having C’s and D’s in my freshman year to having A’s and B’s in my sophomore year. Kursweil is a great program and I strongly recommend it. Visit www.kurzweiledu.com another program I recommend is Inspiration. It is a program that uses bubble diagrams to get ideas together and forms an outline. It is a program I enjoy using. Its fun easy and really helps you get organized.  The site is www.inspiration.com Yesterday I had an evaluation for assistive technology. And found out about a couple of great programs. I’ll update on other programs when I learn about them. And use them and I’ll tell you what I think about them.

Somethings about me

I'm disabled. My story well it starts when I was 8 years old. My parents had never really gotten along. My father left and I started getting headaches. And they continued to slowly getting worse.  The pain was a 7 out of that 1-10 scale the doctors give you to measure pain. I would get them everyday. The doctors were baffled didn't know what was wrong with me. The only thing they could say was that it was most likely stress. This continued for 2 years. There wasn't really one event that tipped me off it was more of a lot of little things. I was able to dribble  ball with my left hand,Not being able to tie my hair up,tripping all over the place, drooping a tray at Disney land. I was a healthy kid. I've always had goals and ambitions. I played a lot of sports before I got sick. Basketball,volleyball,track,soccer,archery, and rode horses. I was active. Looking back I should have seen the signs. But I was 10 and just a little kid. I had nothing to fear. Or so I thought. finally the doctors ran a minor test they asked me to extend my lift arm and torch my index finger to my nose and then his hand. And I couldn't. My world did a 180 in 5 seconds. I was told to schedule an MRI immediately. My mother dd and asked to be called if there were any cancellations. She dropped me off back at school. At that time I had no idea what a MRI did or what it could tell me about what was wrong with me.  It was towards the end of lunch when I was told to go to the office. My mother was there to pick me up and take me to get my MRI and how lucky I was that somebody canceled. I had n amazing radiologist that day. He was funny and really nice. My mother said it was a big machine where I would have to lie flat so they could take pictures of my brain. The radiologist put me at ease. MRI's are loud. While I was having to lie flat I imagined target shooting. The noses were the gun shots. After it was done the radiologist showed me a cool trick with metal and I was off to see my doctors to tell me what the tests showed. I went to the office ad he told me. "You have a brain tumor. And need to go to UCSF Medical Center." He explained that Kaiser didn't have the appropriate surgeons. That I needed immediate brain surgery to get a biopsy to see what kind of tumor it was. I was whisked off to UCSF Med soon after and got my first taste of what my life would be like for the next 4 years. I was scheduled for surgery the next day by one of the best nurseries in the world. They discovered I had an astrocytoma and that it was grade two. A low grade tumor. There are grades that range from one, minor to four, severe I was n the middle. My type is slow growing. I was told it was in a very dangerous location. Hitting my brain stem,cerebrum,and cerebellum. After my biopsy I completely lost the use of my left side. I was left off worse then before. I was a freak a huge freak. I couldn't play sports anymore. I didn't know who I was anymore. And to this day I still haven't recovered. After that 2 and a half years of chemo followed it didn't work and they gave up on me. That summer the headaches returned with a vengeance. My tumor had begun to grow again. And I was scared. I knew my chances of surviving an operation to remove m tumor were slim to none.  That's one of the reasons they hadn't taken it out in the first place. The doctors told me the risks. I could die or become paralyzed. I took the risk. I told my mother I didn't ant to live in pain anymore. The surgery was scheduled and I was 12 at the time and didn't know if I would live or die. Not the easiest thing t go through when your 12.  Th surgery was both a success and a failure. They were able to take out 95/%. But they paralyzed me. About a month after my surgery just as I was being transported to UCSF for rehab I had a seizure attack. I smelled a weird smell and asked my mother to pas me the flowers. That was the last thing I saw m mother face and flowers. My attack begun just as they were about to load me into the ambulance to take me across the bridge. Luck it hit then and not while I was on the bridge. I was having 90 seizures a minute. I blacked out when the attack started.  and didn't wake up until 5 days later. I had fallen into a comma. I couldn't see very well when  woke up. It was like everything was sketched. My mother had her back to me and I whispered mom. Though I felt like I was yelling. she turned around and told me what had happened.  had slipped into a chemically induced comma to stop the seizures. about two weeks later I was stable enough to be moved. I went to rehab at UCSF and I learned how to talk,smile,walk and take Care of myself all over again. I had to learn to do things that many people take for granted. Learning to something as simple as mile with both sides of my face was work.  I exited rehab. I walked out the front doors. And I started school again. I was put in home studied for a few months after the surgery and then returned to school going to school half days. I finished 7th grade with poor grades and poor stamina. I didn't graduate from middle school. Due to no child left behind. which really didn't hep me. I attended a small private school for two years where I met my best friend. That school didn't work ou for me so I went back to public and have bee a lot happier. This past summer I attended the Youth Leadership Forum YLF a conference for students with disabilities and it changed my life. I am ow disabled and proud. And want to be an advocate for students with disabilities. Well that's my story. Sorry its so long. In this blog you'll be able to read about some of the things I am doing in my community to help students with disabilities. I am the first and only cane user at my school.