Friday, July 27, 2012

Me and my traumatic life despite Asperger's

As an individual on the Autism spectrum, I am honored to have accepted the Chapter Representative (Lane County Region) position.  As a representative, I plan to make the most of this position both in the support and education sector and the advocacy sector. As part of the support sector, I have great desire to share my experiences and advice for others on the autism spectrum wherever possible. I have probably been through more in my life than most on the spectrum and would be an excellent individual to speak at yours and other functions.
I have lead a rather traumatic life for a person on the spectrum. When I was around 3 my paternal grandmother was hospitalized for a severe stroke. When I was about 7 or 8, I walked in one day to invite my maternal grandmother  to lunch with my mother and I and caught my maternal grandmother in the middle of heart failure. In the later 80s or early 90s my maternal grandfather was diagnosed with prostate cancer. On the evening of my mother’s birthday in 1990, my dad was hospitalized with severe chest pains and had to have open heart surgery. Shortly thereafter, my paternal grandmother had two more strokes, along with dementia, causing her to be hospitalized and eventually put in a care home. In September of 1994, my maternal grandmother passed away. She had an aortic aneurism which apparently either moved to her brain or ruptured her aorta. She also had previously suffered a small stroke, and suffered from lung cancer, and emphysema. I had also been with her in the previous few years when she broke her hip and I temporarily looked after her. In December of 1995, my other grandmother, my father’s mother passed away. In Spring of 1995, my mother was diagnosed with inoperable lung cancer. She was lucky to have been able to see me graduate high school. It metastasized to her brain and she died five months after I graduated in November (on the 27th, the day after Thanksgiving) of 1996. She had been given six months, but unfortunately only got a month and a half. Throught all his horror, I also endured the horror of bullying and questions at school.  On April 30 (Easter), 1997 my maternal grandfather passed away from his cancer. My mother had made me executor of his will if something happened to her in order to keep my uncle from taking away my inheritance, as he unfortunately did after my mother’s death. My cousin is giving me things she gets every now and then and wants to give me my grandmother’s china cabinet, even though I deserve so much more since I was his and my grandmother’s last and favorite grandchild. This put strain on me because it was sheer theft on my uncles part. We could not fight it because it had a sentence in it preventing this which we were told was good in Oregon. But I would still do something if I could even though the statute of limitations has run out.  In October of this same year, my paternal grandfather passed away from massive heart disease. Shortly thereafter, my father endured four hip surgeries and suffered another heart attack. He is still living thankfully. However, he is my only remaining family member. He is currently in poor health and I fear losing him as I will be alone, scared and have the overwhelming responsibility of his funeral, burial, and his estate, should something happen to him. This trauma has triggered nearly unbearable anxiety and depression including heart palpitations, constant shortness of breath, daily crying spells, bipolar behaviors, chronic aches and pains, eye inflammation, infections, and binge eating. This anxiety and depression have spawned years (since I was about 19 years of age). This was part of the reason I also put a halt on college at that time. Even though I had a decade of not caring about myself and I let myself go physically a lot, I kept a positive frame of mind.
But I continued to stay strong as a rock, thinking positive with a determination not even the entire Vatican could break up! In the fall of 2006, I went back to school and finished my associate degree in the Spring of 2009. In 2009, I started working with Full Access (now Mentor Oregon, now that I’m in Eugene and Full Access is full) and have been lucky to have had really great care providers who got me started on the road to recovery and caring more about myself, though I believe this will be easier when I’m no longer obese. I am also on the road to obtaining my bachelor’s degree in German with a minor in Psychology at the University of Oregon.  This is the reason I moved to Eugene. I touched many in my hometown of Bend, mostly those I have worked with as well as my educators. My former mentor at Central Oregon Resources For Independent Living loves watching my brain work. Back in high school my German teacher was amazed by my efforts, perseverance, and dogged persuit, he allowed me to coordinate the Germans visit that year since the gal who hosted me [when our class visited Germany for a month the previous Summer]. My senior year he had moved away from the area which partly caused some depression as well. I also earned many school awards including being featured in Who’s Who Among American High School Students, which includes brief biographies and photos of five percent of the countries most successful students who are recommended by educators and schools. I also have a letter in bowling. From about 2000 to 2003, I served as Secretary for three terms as well as news and web editor/manager for Central Oregon Street Rod Association. Last fall, I sacrificed a 1,000 square foot townhouse I was renting for around $237/month for  a 450 square-foot one-bedroom place in Thurston just so I could attend the University, and I started class just two days after moving to the area. I’m planning to move to Eugene in the fall and I’m also now a chapter representative for the Autism of Society of Oregon. I can sense myself moving further and further up the road to success.
I want to continue to advocate for autism and those with disabilities until we have complete fair rights and treatment both nationally and internationally, including speaking around the globe and nationwide. I am also a successful language student entering my eighth year of German and four years each of French and Spanish (these are rusty), and just begun teaching myself  Italian. The computer is another  one of my talents. I have been using one since I was nine years of age, when we played games in school on the old Apple computers of the 80s. From there I gained knowledge from the very first version of Microsoft Word on up to what we have now.  I also experienced the beginning of and the boom of the internet. My desire is to work and live, and even possibly go to school abroad in Germany. So, I think something abroad with Microsoft would be cool, so long as I could get SQL and Programming training. I already know how to build websites, etc. And in school, I plan to obtain my masters degree and PhD. I am extremely ambitious, and I think the drive came from my mother who always taught me that “can’t” can’t do anything, so I was always taught “I think I can, I think I can, I think I can.” She believed in me more than anyone on this Earth. When early educators threatened to place me in ERC classes, my mom refused to let them. She knew I didn’t need these and that I would be greatly successful. She loved me more than life itself.  My German teacher persuaded me to go on because he saw in me an uncanny talent of languages. He was such a warm, fun-loving guy who thought the world of me and we became close friends. He composed a two or three page letter of recommendation for me and soon after moved away. Ever since this time, I have taken this great encouragement with me everywhere.
1.    Trauma-How to make it through hard times and keep your sanity with autism
a.  Keep a positive outlook. Never give up. Try to take a deep breath and repeatedly remind yourself that everything will be okay. Set Goals For yourself, put your heart into what you love and go for those goals. Don’t even think about hurting yourself. A friend of mine threatened to do this. I called the police and saved her life. The Deputy assured me she was being taken to the hospital and with some additional help, she’s been better ever since. As a matter of fact she was a silver medalist and double bronze medalist at this year’s Special Olympic Games (nationals). She has also had two regional gold medals! Nobody threatens their life in front of me. I WILL CALL 911.  
b.  Be sure you have great support. My friend used to think no one cared about her and lived with a “whatever” kind of attitude. Don’t do this. People care you just have to make yourself get out there and meet them. And great relationships and friendships can happen when you least expect them. Whether it be a care provider, a parent, an educator or a close friend, be sure you have someone you can turn to when you need to help and who will keep helping you until the mission is accomplished! When we moved to Oregon when I was five years old, I had only had preschool. When I turned six, I was put in first grade without any kindergarten. My teacher noticed me playing with my glue, etc. And when I would go out after school and ask my mom if I had to go to school the next day, I would vomit from relief if she said no. This tells you how stressful it was for me. I even choked on my own vomit in the car once!  I could do the work but was not emotionally ready for first grade quite yet. Well the teachers thought I needed ERC classes. This is where mom came in. She told them, “No way! Not my daughter. She’s too smart for that. “  She had believed in me from the beginning always persuading me to think “I can” and  drove it into my brain that “Can’t” can’t do anything! She helped out with my homework when I needed it as well. I could consult her about anything. My elementary and secondary educators knew me as being a good students who was always helpful and also through my mother who was always the room mother at our school, doing parties and stuff for my class and for the school. She was a PTA co-president for a while. She felt helpless if she wasn’t doing something. My mother was always a work-a-holic. She truly loved it. My German teacher was one who inspired me to go on with my languages and would, upon wishing me luck, tell me I probably didn’t need it anyway, I was so with it! When I entered VR some years later to find employment I had two great women who could read me like a book and hired a behavioral therapist to help with daily housekeeping and hygiene as well as diet and nutrition. Well, this therapist read me perhaps even better than my VR ladies and I learned a lot from her. She came up with the idea to place me on Full Access Brokerage. They help the client (myself) hire individuals who are much like behavioral therapists, called care providers, They help you to take care of you home and you hygiene as well as help get you out and about doing things in the community, exercising. They also have helped me with grocery shopping, cooking and nutrition. My last provider in Central Oregon also aided in my move over here to Eugene. She spent a few days helping pack, clean up my place for the new tenants, and came over here with us, her and her husband to help me move in and unpack. I have been on the brokerage since Spring of 2009. This process has certain requirements for consideration and placement and after three tries my first behavioral therapist managed to get me on. Now I want to do this for a friend of mine who is unable to get on. And I hope to advocate so that these requirements are far less complex in the future.
c.  Therapy Pets. Therapy pets, especially cats (if one is not allergic) also help calm you down when you need it.
d.  Go about things yourself. I know it’s hard for some people but that is what your support is for. I was persuaded by a social worker of mine whose husband was the president of the college I graduated from, to go back to school. So I managed to apply for and obtain my own financial aid and went back. I also took it upon myself to get affiliated within the community and with the ASO. Do it via email if it makes you feel better than by phone. Or send in your form and/or write to them. Get to know and help your community. If you need help ask others to help. You’d be surprised at the results!
e.  Take classes and workshops. I just completed a healthy lifestyles workshop, which helps you learn how to heat healthy, what to eat and about having a healthy social life as well. You  can also get into Jewelry making, music, whatever fits your fancy. These give you something to do and are fun at the same time. And you gain those friendships I was just talking about. Autism camps are another fun activity. We do the Kindtree camp every year on the Oregon coast.
2.    School Teasing and Bullying as well as Educator Abuse and Descirimination
a.  Early intervention is a must. Take the time to learn about your child’s condition and get involved. Educate their teachers and their school on the condition. This includes the students. Get an assembly together if you must. When I was in school, no one knew about autism because it wasn’t as great as it is today. And forget about AS, because nobody knew about it until 1994 at least. I always rocked and hand flapped. Other kids always repeatedly asked me why and all I could tell them was that it was “a habit”. I didn’t even know what it was. When I was a toddler I was told it was vestibular disfunction, which turned out to not be true. It was in fact “stimming” or venting my hyperactivity and anxiety, as I would later learn after I was diagnosed with PDD NOS at 17 and AS at 21 because I didn’t have any verbal delay and had “autistic tendencies and other issues. Had we known more about autism and had it been more in the spotlight back then, I could have educated our schools and my outcome may have been much different. I also had speech therapy which surprises people, because my speech sounds great. I could look at a picture of a mannequin and literally tell the speech therapist it was a mannequin. This amazed her. I also amazed everyone with my spelling for that matter. I could spell words like “precaution” in the third grade at age nine. Plus I was lucky to have teachers who helped me understand what I didn’t understand. Don’t hesitate to ask for extended test and paper times either. If preschool, kindergarten, or elementary, speak directly to the childs teacher, if this gets you nowhere, go to the principle if nowhere, go to the superintendent, and if you are still nowhere change school districts if possible. In middle school and high school, have your child and/or yourself speak to the counselor. However, in college don’t ask the teacher directly make sure you get a disability letter from your disabilities director you working with and ask them to help you get whatever you need to be successful. The longer you carry out your intervention streak, the better off you are.
b.  Bullies: I have endured a lot of name calling and teasing because of my rocking, handflapping, picking my nose, and my weight. In elementary school, kids used to make me repeatedly tell them that my boogers were good. In middle school, I used to get my locker door slammed shut on me all the time. In seventh grade I had the worst joke played on me. I was heavily into a singing group that was going out then and people didn’t like them. I got a prank phone call that I’d won tickets to this groups function and fell for it. Nothing could be done because we didn’t know who played the prank, or whose I idea it was. Now, looking back I wish we would have had the call traced and reported it to the school, but my parents did think it was serious apparently.  I felt so humiliated and so hurt. My other bully was a kid who used to get on me all the time about my weight. I was taught to eventually protect myself by saying “I may be able to lose weight, but you’ll never grow a brain.” Learn ways to stand up for and protect yourself.
c.  Tummy Troubles: I used to not go for weeks and then I would go, but one time I vomited what I think was incompletely digested fecal matter, but in school I used to get diarrhea a lot and I remember having a bowel movement once and during get getting paged to go to my bus.
3.    Employment
a.  Obtaining suitable employment has not been easy for me. My first job was at a grocery store, and I was let go after only five days of my position. It is my belief that my supervisor was a stuck-up to her boss, and I was not given the proper amount of time to learn my job. Due to my AS, I was slow in the beginning but would have picked up over time. My second job was at a fast food place for a couple months. I quit because they had me down to working only one day a week. The reason was not clear. After this I worked as a cold-caller for four months, and again I had to quit before being let go. They would not accommodate me so I could do my job properly, so again I quit before getting fired. After this I was at a thrift store for a few months, where it was too much commotion for me to concentrate on the sales floor part of the job. The cashiering wasn’t bad, but I had light struggles there also. So, once again, I quit before getting let go. My longest job was at a bulk mail company where I lasted four years but only because my employer only tolerated me because he “needed the work done for the money”. He would bite my head off and blame me for stuff that was not my fault. It was okay in the beginning, but got to the point where, for example, if he bought lunch out, I would get the refrigerated messy burger that was left over. He promised to help me eat healthier when he’d order lunch for everybody, but then wouldn’t let me because I wasn’t his family (even though I was treated more like his stubborn kid than his employee, which isn’t right.). When he’d leave the office to go out of town, co-workers were asked to keep an eye on me and then report on me when he got back. I was asked to constantly take out the garbage before I eventually quit. I was never told I would be doing this upon being hired. Everybody got nice furniture except for me because I was not “full-time”. I believe he drove me to quitting before he fired me as well. He was just as excited as I was that I was leaving, or so it seemed. By the time I tried to take action on it, no one would help me and I couldn’t get a hold of BOLI to see if there was a statue of limitations for this since I have a disability and this is a violation of the Americans with Disabilities Act (ADA). Employment seems to be difficult here in Oregon, which bears serious repair. My last job was at a software building company and only lasted a week because they could not train me properly. Even though it didn’t have to do with my disability really, it is part of my employment struggles.

Through my experiences, I have learned that as a person with a disability you have to keep going on your journey and keep trying to find those people who truly care and keep doing the best you can to survive and be successful. Because the right people are out there, even though they may be more difficult to find or may take a little longer to find than for a neurotypical person. So we should never give up, ever. I will never give up or give up hope and faith.