Category Archives: mainstreaming

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.

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.

Thanks Cathy

My friend, Cathy, is leaving me as my aide. I have had many aides in school over the years. I am starting to accept that none stay forever, but I wish Cathy could have stayed for years. In my situation I really need an aide who is intelligent and good at communicating with me. She really assisted me in lasting all day in regular education, in communicating in class, and in doing my work in class. I got more independent as the year went on. It was like a goal I had which she helped me to achieve. Now she moves on in life and I wish her lots of luck in her goals.

Cathy, my wonderful friend, I am fortunate I had your support in school in 8th grade and at home before. Thank you for everything.

Thanks to My Middle School

The middle school I just graduated from was big. The procession in the graduation went on for about twenty minutes. It was the longest parade of students in suits or fancy dresses and high heels. The graduation meant a lot to me because I earned it. I thought about my journey to this point. I think I need to say thanks to the school.

In my education, I never had the chance to show my knowledge until middle school. It was the first school that accepted me as a student who could learn at grade level. They accepted me as a person who was different but not who needed to be kept from regular education. Each year got better and quickly became a full day of mainstreaming. When  I started I wasn’t sure I could do it. Now I know I can. I am starting high school with the knowledge that I did well in middle school.

My teachers were taking on a new kind of student. Classes were humongous. I got minimal individual attention. Classes were interesting or boring, like any other student’s experience. It was normal boring, not a mind numbing denial of education boring. I am grateful to my middle school for that. Some teachers understood me and my situation better than others. Some were not very insightful at all. Some were open-minded and some were probably annoyed to have a disabled student crowding their classroom with an aide. The truth is, they all gave me a chance. Some people really never have this opportunity. It was hard, but a great thing to learn and be part of regular classes.

I think some people were amazingly helpful so I want to to acknowledge them. First, I want to give special thanks to my wonderful aide, Cathy, for the patience of a saint, her lovely disposition, reliability, and wonderful communication skills. I also want to thank Mr. Miller who was always the problem solver and support I needed in administration. Last,  thanks to Mrs. Johnston who in a short time became a huge help to me in my journey toward high school.  The rest of the teachers deserve recognition for putting up with me. Ha Ha. 🙂

Nervous About Starting High School

In a few weeks I will graduate middle school and next year I will start a new school. It’s a big deal in my life.  My middle school was the first real opportunity I had to learn in school. I know 6th grade was like an experiment. They watched to see how I could cope in middle school. I went in to math and science only, and did regular work in the other subjects though I wasn’t mainstreamed in them then.  It was a very big adjustment to sit so long in self-control and quiet. The schoolwork was simple compared to sitting in a classroom all day. I was determined to get a decent education, so I tried. It was not always easy for me or my aide, but I got more capable each year. This year I am doing better.  I am mainstreamed practically from eight to three. I go to P.E. with autistic kids, but otherwise I am staying in a regular class all day. My school is big. I switch rooms.
Next year my high school will be bigger still. It has thousands of students, so many clubs I couldn’t believe it, and a track and football field. It is a real big school experience. It’s scary for new freshmen, I know. I’m really nervous. I worry that my sensory system will be overloaded. I worry that students will be mean to me. Then I tell myself, “OK, it’s just worries and I am going to be fine.” I will be with some kids I know. I can walk in the halls five minutes early to avoid the mob- but I can’t stop my worries.
My aide is the best. It’s wonderful to work with her. She is kind, smart, and good at working with me. I don’t know her plans next year. I hope she can stay to start me off, or even longer. Now I worry that getting a new aide and a new school will be too much. Some days I get overwhelmed by worry. I wish I didn’t, but I do.
I worry about the teachers. Will they accept me or think I am an odd nuisance to them? I worry about the students. Now I am in class with kids who are used to me. Next year there will be new kids. I always visit school before the year starts to meet all the teachers and tour the campus. That helps a lot. I also wrote a short speech that is read to the class on the first day of school to explain my behavior and communication style to the class. That helps put them at ease, but I am still so nervous inside.
I realize I am lucky. It’s a great high school. It’s a dream of mine to graduate and go to college. I will need to overcome my fears about high school. It’s a big shift in my life. It’s the third big change I’ve had in school. I went from remedial class in elementary school to a “high functioning” autism class in 5th grade. Then in 6th grade I went to my middle school. This time I really don’t need to prove I’m smart to a school of skeptics. I think I’ve done that, so that is one big relief to me. It’s wonderful that they believe in the need to educate me, so I no longer need to worry about that.
I feel next year could be good. Unfortunately it’s unknown, so I worry too much. I feel relieved to write this. If you have tips, once again, to help me relax about this- I’ll take them.

My Speech at the Autism Society Conference

I am autistic, as you may have figured out by my restlessness and the obvious fact that someone else is reading my words. The question I have for you is if it surprises you that a non-verbal autistic person writes well?  This was mentioned a lot by professionals as I began communicating. People who thought of me as the “low-functioning” sort could not adapt to my intellectual abilities. This led to a rough time, to put it mildly. It’s a real problem. Truthfully, many theories made my early life challenging.
Theory One told my parents that I couldn’t understand speech, so I was talked to like this: “Go car”, “All  done”, “Hands quiet”, “Good job”, “no”, “Say hi”, “Go school”, and so on. I would have preferred if they had just spoken more normally.
Second Theory said that because I couldn’t understand speech, I needed super basic books. So, I was denied really interesting stories. Just last year an autism teacher I know gave me a cardboard toddler book as a gift. It is a comical notion because she was well aware that I was mainstreamed in my classes. Still, she thought, “Non-verbal autism/toddler”. I have to laugh it off, but what is she really implying? Is it this bias that really denies non-verbal people an exposure to interesting ideas? I read interesting, challenging books at home. This teacher thinks “Pokey the Lost Puppy” is better.
Theory Three was that because I didn’t show I understood, I didn’t. This meant that school was really a total bore. The teachers refused to teach interesting things because they knew we couldn’t understand. Like the teacher I just described, though well-meaning, they bored their students to a point of emotional withdrawal into stims or indifference. I think this is really sad.
 This leads me to Theory Four which says that there is an 80% chance that I am mentally retarded. In fact, a psychiatrist recently reminded me that most autistic people are mentally retarded. So I ask you this- is Stephen Hawking also mentally retarded? After all, he can’t speak, is locked internally, and needs constant support. Or is not speaking different than not thinking? 
There are a lot more theories, but I’ll stop here.
The problem was that these theories were not true for me at all, but when I was little I had no ability to show otherwise. My inability to get my body to do what I wanted was interpreted as a learning and thinking problem. Even as I emerged into communication, a majority of teachers and others I worked with were initially rigidly stuck in seeing my efforts as the imaginings of an over-zealous mom, rather than an intelligent, understanding non-verbal autistic boy finally finding a way to escape his prison.
So I was bitter for a long time. My journey was made harder by those who were in a position to help. They refused to see what was true. Good theories were better than reality. I felt really angry for several years because no one seemed even happy to help me grow. They were skeptical to the point of cruelty.
An example was when my first speech was published in a newsletter for The Friendship Circle three years ago. The only negative feedback came from a teacher of autistic kids who stated that in twenty-five years she had never met a non-verbal autistic person with such advanced thinking and writing skills, so therefore I couldn’t have such advanced thinking and writing skills. This way of thinking not only insulted me, but it meant that she was unable to see the potential in her own students. This needs to change, I think. 
Thanks to my persevering parents, we let go of the folks who thought like her because that was hindering my education. This led us to find people who were more open-minded. In the last four years I have had a much happier education. The School District has energetically supported me in mainstreaming since I began Middle School. They have provided me with my aide from an agency so that I can access my education.
The truth is, the changes set me free. Once people saw me in a new way, gave me opportunity and a chance to improve myself, and supported me- you can see what is possible. Next year I will go to a regular high school in all regular classes on a diploma track, and I will continue to do the same work as everyone else.
This is thanks first to Soma who taught me how to get my thoughts out in letters and typing, my physical fitness trainer who woke my sleeping body, and the many other professionals who help me achieve this.
Like all kids in middle school I have some great teachers and some lousy teachers. That’s OK. I’m not complaining. It’s a normal education, but only four years ago I was still in an autism class that showed me ABC movies every day, one plus one math, how to find stuff in play dough, and other thrilling lessons day after boring day.
To the credit of those who gave me the opportunity to learn at grade level, I am trying hard to do well. It can be lonely. Middle School is not a kind and compassionate age for any kid and I am the most different kid imaginable. I am far below the social pyramid. Still, I will be a successful man in my life. Disabled or not, I am determined to have a meaningful life.
The future is unknown to me like it is for everyone. I don’t know if I will have an improvement in my symptoms. I don’t know the path I will have in college or a career, but I know I will aim to achieve for myself some kind of job and intellectually stimulating work. I can’t stim my life away. Only I will need support to do this. I have a wonderful aide in school. She is helping me focus and communicate to the class. Without her I couldn’t access my education. She helps me function in society.
I will need smart, trained aides like her in college and after. The truth is I will always need someone, like Stephen Hawking does or Helen Keller did, but I will try to keep working on skills. I’m not sure where I will want to live. I see a lot of slackers still at home- ha ha, but I never, ever want to be in an institution or a place that patronizes me. I want to live as normally as I can.
Now, if my parents had not started to look at my illness in a new way, I might never have emerged from my prison. I would still be bored to death in a remedial autism class in high school, where my former classmates all are. I want to know if you think I am the only intact mind in all of them, or could it be that some of them are also intelligent and understand everything? I think the sad thing is, many will die and we will never know.
I used to come home from school in 6th grade, and I would weep so much for them. I was partially mainstreamed then and doing grade level work in the other subjects in the aut class as I adjusted to a longer and longer mainstreaming day. The other autistic students would watch me communicate and learn, though they were not doing either. 
Isn’t it possible to at least teach them some interesting lessons, even if the kid can’t communicate well yet, in the chance he is trapped internally, as I was? I wrote before that boring people to death is like denying them life, liberty, and the pursuit of happiness. 
I also think that autistic kids need more exercise than they get. Look at flabby, weak autistic kids who have poor body control. Don’t you think weights, coordination exercises, and cardio fitness would help? It did for me.
Communication is essential. To answer how,  will require a new way of working with autistic people. I feel non-verbal people will be heard from more and more. Will you be open to listening?