Category Archives: adversity

Onward Upward

Well, I am starting a new high school next semester. It is good to be free of my old school and entering a new one. I feel welcome and accepted. This is a wonderful change. Why some schools are friendly and others not is a subject good to explore another day. I am hopeful now that I can enjoy high school and that I will succeed there. Hope is great because I felt hopeless in my last school that I could enjoy it, be relaxed, and feel supported. It is a good lesson because some systems can’t be fought. The system is closed and you can’t change it. The only solution is to get out and even that wasn’t easy. It is a start to my new year in 2012 that I will go to a warmer and far more welcoming school. I will need to adjust to all new routines, classes, schedule, and environment, but I’m sure I will and I’m really looking forward to it.

Starting Over

I went to check out another high school today. They had Open House. I think many of you have read about how difficult my high school has been. It started rough, in part because I had an unprepared aide who was not ready to work with a grown kid. I am tall and strong, so I am not easy like a small elementary school kid. I was also overwhelmed by the size of the school and the number of students. It was incredible how many came out of the rooms when the bell rang. Finally, it was pretty clear to me the school was worried about my early behavior when I was overwhelmed. It was unfortunate because I did great in middle school. Not perfect, but better each year.

In high school I started improving steadily too but I think my less than stellar start has affected the ability of some folks to see my improvement. Still, I get excellent grades and I try very hard to excel. Now I have my old, trusty, terrific aide, Cathy, all year (yay), and a wonderful new aide in training for next year. I was at the end of my rope a month ago. I came home from school in a sort of panic. I pleaded to find me another school because I felt unwelcome. My mom began looking and found some possibilities but I wasn’t eligible for different reasons, usually residence issues. She found one possibility I visited today but we don’t know if I can transfer mid-year. Oh wow- it had a horse and goats and sheep, but it also had friendly people and a warm and welcoming administrator. Cross your fingers for me.

I decided to overlook the fact that I feel unwelcome now in my current school. This has helped me relax and I can see I feel calmer. It also helps me mature. This challenge of my high school made me grow and get tougher but I am still eager to move on to a smaller, warmer school.

Struggling Against Attitude

I live a surreal life in Autismland. I work so hard and I struggle all day to manage daily in school. Still, I struggle to be welcomed. I push against the door to be let in to have a decent education, but I get in and find I’m still stuck outside. What do I mean? I mean it’s not easy to struggle against attitude. Maybe I need to develop a sense of humor about it. Maybe I’m too sensitive for my own good.

I gave a talk yesterday. A lot of my writings were read. In the Question and Answers at the end a nice lady asked if I really understood everything. Then after she was told yes, she incredulously repeated, “Everything?” The funny thing is, if I write smart ideas I must understand English, right? In the moment I felt mad, I must admit, but now I don’t. I believe she expressed the doubt of many, actually, especially if she is a special educator or something like that. I’m sure I don’t fit the model that people expect for a limited-verbal, hand-flapping oddball. Ha ha. I laugh at myself too.

I have to assume that I kind of challenge assumptions about autistic people. I have to prove to people over and over that I really am communicating. They stand next to me, or behind me, or near me, and watch me type or point on the letter board. They find I move my own arm, react to their questions, and communicate for real. How many people have I done this for? OMG, it seems like thousands, but it is only dozens and dozens and dozens and dozens…

They are professionals, and parents, and friends of my parents, and I have to prove myself to everyone so they know I am smart. I get it and I accept it. Maybe I need to get a movie of me typing we can put it on an i-phone and show them. Then I won’t have to be observed like that. On the other hand, it is fun to see their skepticism vanish. I have sat with medical doctors, neuro-scientists, psychologists, and skeptics of all kinds. After a few minutes they stop doubting and I can relax. I suppose I need to laugh, but it’s the people who assume I don’t communicate or don’t do my own work that bug me most of all.
OK, that’s my rant for today.

Touching the Void

I watched an amazing movie yesterday called Touching the Void. It’s not a new movie but it is new for me. It tells the true, incredible, epic, survival story of a climber named Joe Simpson in the mountains of Peru. He injures his leg terribly. It is a break that makes his leg unusable. The weather turns bad and he and his partner are exposed on soft snow they can’t hang onto. The snow blocks their vision and the partner accidentally lowers Simpson over a ledge. He is hanging in the air pulling his partner off too. The partner decides to cut the line. Simpson falls into a deep crevasse.

From there I can only tell you he endures super-human challenges. I watched how he did it. First, he focused on what to do, not on how he felt. If he panicked, he re-focused on his task rapidly. He had no one but himself to rely on, but he was thinking constantly, not in self-pity but on how to keep moving forward. One strategy he had was to make small goals that he had to achieve by a certain time. Once he reached his goal he immediately made a new one. This kept him moving forward all the time, but with small goals he could achieve, rather than a seemingly impossible huge goal. In this way, inch by inch, he crawled off a mountain to life.

I couldn’t help reflect on autism when I saw this. Working out of a neurological illness is kind of like being in a crevasse. I see that small, steady goals, an absence of self-pity, and focusing on thought, not emotions, works on that too. Simpson may have survived by true grit but it’s a lesson I can learn from.

My Friend in Middle School

I was thinking about my friend who is autistic and starting middle school. He is a smart guy but he isn’t educated in a scholastic sense because he was kept for years in an autism classroom. Now in middle school he is starting to go to a regular class for one period. He is overwhelmed and scared and being watched. It is hard to be scared and overwhelmed and scrutinized. In his case he suffers more because he can’t communicate with his one-on-one. It’s a struggle to do the work if you can’t communicate and you’ve never sat through a regular class before.

But in spite of this, he is smart and he deserves a chance to learn. He isn’t learning anything in his autism class. I mean, if you couldn’t talk and I stuck you in a pre-school class year after year, how would you like it? It’s not a matter of he needs to be normal before he can start to be taught, because he will wait forever. He needs to learn how to learn. No one showed him this lecture format before. Imagine moving from toddler class to middle school with no preparation. Then the school is inferring that he really isn’t ready.

It was my experience too, and to some extent, it still is. I am over the days of proving I am smart, but not over the days of scrutiny. To be autistic means you have to prove yourself over and over. I sometimes imagine how my scrutinizers would like me scrutinizing them. I think we who work to emerge from autism need to get a little more empathy and a lot less judgments. The disabled can do a lot but we fight not only our disability, we fight prejudice, of sorts. I accept it. I’m used to it, but it’s new for this boy. I wish him and his wonderful mom strength and perseverance.

The Importance of Calm Assistance

I can imagine I wasn’t the only freshman who was nervous starting high school. I could see they were also scared. I saw they were lost trying to find their way around, and lots of them were shorter than the older kids. Just like them I was nervous and had a hard time in school. I hope I am not sounding whiny when I say I can’t cover up my feelings in the same way most people do.

This week I watched the blind athlete, Erik Weihenmayer, compete on the adventure race TV program, Expedition Impossible. I wrote how his race was harder because he did it blind. His teammate, Ike, had a serious injury. His race was harder too. They came in second in spite of it. I never saw them stop in self pity or expect the race to be made easier for them. The victory was that they did so well. I would love to meet them. I think it is a triumph because Erik is showing people that being disabled doesn’t mean not living fully.

He is a lucky man because he met Jeff. Jeff is his climbing partner; his eyes in a way. I would love to have a guide like Jeff to help me in my challenges too. He is optimistic and positive and calm so everyone else stays optimistic, positive and calm- and motivated. I have had the pleasure of some terrific support in school. The reason I can accomplish the goals I have set is thanks to people like Cathy, Katie, and others. I see how their relaxed demeanor helps me. It’s important because I am nervous in school.

This year I had a nervous aide for five miserable days. She was not a relaxed woman at all. I saw how everything got her tense. I saw how small things became big things because she over-reacted to them. I saw how she made my mom worried and me panicky.

I think Erik needs calm, thinking Jeff to achieve his great accomplishments, like climbing Mt. Everest. Someone who leads with tension really hurts morale. I see it blocks thought too. It becomes about how they feel, not about working things through. I am sensitive to people’s state of mind. I think nervous energy is transferred one to the other. In autism we are all easily flustered, so a person working with autistic people needs to be a calm type.

Besides being a calm type, Jeff was also a leader because he got his team to work hard. No Limits was a sort of ambitious group. No one wanted to let his teammates down. So, I meander in my flow of thoughts and I reach this conclusion: Ike and Jeff respected and believed in Erik. They believed he could do it even though he was blind. They went on the adventure for joy, and the experience, not just to win. By their support of Erik, he was able to achieve amazing things. It didn’t seem to be a bother to Jeff. He did it in stride. He would advise, “Duck here”, “Rock on the right”, and so on. So Erik was calm and secure to the extent he could be.

As I said earlier, in high school all freshmen are anxious. The school is so big and intimidating. In autism we all have anxiety issues when it’s good, so when we are scared it is so much worse. If we are also being monitored by people with notepads, it is even more anxiety provoking. And if our support is not a relaxed person, guess what happens?

Helen Keller had a calm Annie Sullivan to support her endeavors. The people who assist the disabled must be a special type of person. I have mostly been lucky. I am eager to begin the next phase of my high school experience with a friend at my side helping me. Life’s journey is always filled with new lessons.

No Limits

So, school has started. It is feeling a tad overwhelming. I try so hard to not lose my composure. It is a struggle all day. It’s interesting how it affects me. I have an overload of heat, crowded halls, and sitting still. I get so edgy in an instant. I try to control myself. It is a huge effort but I must do it if I want to achieve my dreams. Still, the struggle is hard. But isn’t life a struggle with some benefits of reprieve in between the challenges? It isn’t the other way around. We kid ourselves in imagining it is.

I watch a show called Expedition Impossible. It is a race competition in Morocco with teams of three trying to be the last team standing. One team gets eliminated each week. I see how hard they push themselves in high altitude, or in deserts, or in all kinds of different terrain. They have to mountain climb, repel cliffs, kayak rapids, ride camels, row and sail rafts, do puzzles, and overcome illness and fatigue. It is interesting in a way to see all the types of people in the race. Some are supportive and some are obnoxious, and some are weeping in overwhelmed self pity even though they chose the challenge. It is like me in high school. I chose it, so I must be the not-obnoxious or weepy one.

There is a team I will tell you about. It is a wonderful group of three athletes. One is blind. One is a US soldier who injured his leg severely on the trek. One is the eyes of the blind contestant. In a way he is the spirit of the group. He is so positive and they are all amazingly positive and determined and tough. The blind man, Erik Wiehenmayer, is incredible. He repels cliffs without sight, climbs rocky mountains, kayaks rapids, crosses a river on a zipline- all by verbal tips, and courage. He won’t let his disability stop him though his trek is harder than all the others. They all struggle too. He does it with no sight.

I see his decision to fight against limits. He won’t surrender to the easy way out. It is a good reminder to me too. I have a choice to be lazy or weak, but I will do the struggle. I too want a life not limited by my disability, so I guess I need to remember when I get overwhelmed or school is hard that my goal is my liberation from stagnation and more. I want to succeed as Erik shows me, in spite of autism and in spite of challenges.

Hope for Tornado Victims

I heard about the horrible tornadoes in the South and Midwest. I can’t even imagine how scary it was for the people there. I live in earthquake country. We have spare flashlights, canned food, and water, but in a tornado all is blown away. I heard about people hiding in their bathtubs, of whole communities destroyed, and of weird stories too. I was saddened to hear that it is possible to be lifted into a tornado, so I was amazed to hear about the dog that was sucked into one and flown away. Crawling on broken legs it made it home twenty days later and is now recovering.

I guess the lesson is to not give up. My grandma went through a lot in her life. One day I’ll tell her story, but she is a positive person and a fighter too. I’m inspired to fight from people like her who face intense challenges but who get going instead of quitting.

I wish the victims of the tornadoes fighting spirit. This will be a long recovery but hopefully your homes will be rebuilt and your hearts will heal.