Monthly Archives: August 2011

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.

Adjusting to High School

I wrote a long blog essay yesterday, but I didn’t post it in the end. I guess it isn’t good to put all thoughts on the internet. It is a very public land on the internet. You can’t expect privacy, but it is a weird forum. I know my most internal thoughts will be read by strangers in places I have never been to. It is odd because you know me in a way, but I get few comments on the blog- I think it requires an account or something- so I get more comments on facebook. The feedback motivates me to keep trying because I hear from parents that I help them try with their autistic kids or that I give them hope.

I feel like I have to calm down inside. For many reasons adjusting to high school has been rough. It has been a huge change, and my first aide was not a good match for me. That didn’t help either, but it will be better next week. I like most of the teachers very much. I’m sure I will learn a lot. I love my English class. It is great. I enjoy Music History too. It is a hard adjustment but a wonderful opportunity.

I am sorry to say I lost it in school. It was so much pressure. I’m sorry I got so flustered. I see hope now. I believe now I’m on the road to being myself in school. I hope I can show my true potential. I’m trying hard.

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.

Envy Sucks

“If I didn’t have autism…”is a phrase I realize is filled with turmoil. If ever I imagine my life as I wish it was I get so blue, so it’s better to focus on what is, not what it isn’t. I have moments when I envy my sister or cousins or friends. I wish I could socialize with ease like they do. I wish I could be trusted alone. I wish I could learn to do things I can’t, like sports or singing. I hope I don’t sound whiny, but I see what I wish all day and it hurts sometimes. Still, I will keep persevering because I am determined to not waste my life in negative envy. Autism is a challenge I will deal with.

Oscar Pistorius is a hero of mine. He runs at world class speed and he is trying to get into the 2012 Olympics, but the Olympic Committee is trying to keep him out because they say he has an advantage. The advantage is that he has no legs. Ha ha- what an advantage. They claim his prosthetics cheat, so he is struggling against a disability and stupidity, as we disabled people do daily. Still, he is a fighter and I admire his never taking the easy way. He could have sat around moping as a legless kid. Instead he put on prosthesis and played rugby and he ran.

So I guess he had his down moments too. I keep thinking how hard the fight is. I know I have to fight, so I won’t mope. I will see my work to the end, though I realize the end is always out of reach. It’s true my illness is a trial at times. I can’t wish it away any more than Oscar Pistorius can wish his legs back. The solution is to fight envy and deal with what is, not what might have been.

Envy Sucks

“If I didn’t have autism…”is a phrase I realize is filled with turmoil. If ever I imagine my life as I wish it was I get so blue, so it’s better to focus on what is, not what it isn’t. I have moments when I envy my sister or cousins or friends. I wish I could socialize with ease like they do. I wish I could be trusted alone. I wish I could learn to do things I can’t, like sports or singing. I hope I don’t sound whiny, but I see what I wish all day and it hurts sometimes. Still, I will keep persevering because I am, determined to not waste my life in negative envy. Autism is a challenge I will deal with.

Oscar Pistorius is a hero of mine. He runs at world class speed and he is trying to get into the 2012 Olympics, but the Olympic Committee is trying to keep him out because they say he has an advantage. The advantage is that he has no legs. Ha ha- what an advantage. They claim his prosthetics cheat, so he is struggling against a disability and stupidity, as we disabled people do daily. Still, he is a fighter and I admire his never taking the easy way. He could have sat around moping as a legless kid. Instead he put on prosthesis and played rugby and he ran.

So I guess he had his down moments too. I keep thinking how hard the fight is. I know I have to fight, so I won’t mope. I will see my work to the end, though I realize the end is always out of reach. It’s true my illness is a trial at times. I can’t wish it away any more than Oscar Pistorius can wish his legs back. The solution is to fight envy and deal with what is, not what might have been.

Starting High School

Next week I go to a huge high school. It is intimidating. Still, I am so thrilled to have the chance to go. I think often how lucky I am to have escaped autism education. It was well-meaning, so I feel no anger about bad intentions. But however good the intentions, the result was stagnation in insufferable boredom.  How many times must I do my schedule or read the same stupid words over and over? The days were repetitive. I learned nothing academic, so the journey I have been on for four years is the beginning of the true education of Ido.
I understand the school mostly has to accept a disabled kid by law. Not to complain, but my mom looked into a private high school to see if they would be interested in having me, but they were totally determined to not have me (but they never said it was because of autism). So, public school is a welcome doorway for me to have a chance to learn.  I worked very hard to get to the point to go to regular high school. I realize I am at a crossroad in my life. I intend to work hard and earn this opportunity. 
I am not under any illusions that the school is thrilled to have a seriously disabled student. I am a challenge. I am expensive because I need an aide. But I am a student who is pioneering opportunities for the disabled too. I am doing the same work as all the other kids so I don’t expect charity or pity, only I hope to get tolerance, sensitivity to my situation, and fair treatment. The doors open on Monday, and I’ll try my best.

Cherishing Our Loved Ones

I was thinking about my grandma. She is a really brave and nice woman. In the weeks since her cancer was diagnosed she has gone through hard times. She had surgery to remove a tumor that was spreading the disease, and she is not young. Recovery is hard and she is getting stronger slowly. I know she is still living with cancer that was not removed so I know she is ill still. I think we need to make time to enjoy her brave and lovely presence as much as we can. We sometimes forget in our troubles and busy days to cherish our loved ones, but when one is sick it focuses this need. I love my Oma. Each time I see her is precious.

Me, Nick, Sydney and Emma

I have some friends I love to see. Unfortunately I don’t live near them.I have a long drive of an hour and a half once a month to see them but I feel it’s worth it. Each of us is living in Autismland but we can all communicate in typing and letter boards. Some use i-pads. I use a dynawrite or a letter board. Each of us is living the best we can in spite of our challenges.

We all have very loving families who noticed the potential in us in spite of expert advice that preferred to see us as “low functioning”. Thanks to our parents’ hard work we are free in life. I notice we all have very persistent, positive, and determined moms who didn’t want to give in to a label that told them it was hopeless. The result is that we are their kids in all ways like any other in spite of autism. In this group I don’t have to work on acting normal. I can be autistic with people who are friends, and friends with lovely, intelligent people who are autistic.