Monthly Archives: May 2011

Remembering Heroes on Memorial Day

The three day Memorial Day weekend is here. So far we have enjoyed a family gathering and swim, a BBQ and soccer game (Barcelona vs. Manchester United), a hike, and I know we will do more fun things. So for many, the holiday is now a fun BBQ or shopping holiday.
Last year my dad showed me and my sister some of the mini-series, Band of Brothers. If you never saw it, you should. It tells the true story of a unit in World War II called Easy Company. They were paratroopers into Normandy against heavy German bombardment. I learned a lot about fear and conquering fear. They were young, scared guys who would have preferred being home. Still, they did their duty as a team.
The truth is they are heroes. A hero is a regular guy who does exceptional things. These guys bravely fought, because talking and negotiating with an evil government merely made that government more cruel.  Neville Chamberlain, the passive English prime-minister, set the stage for a more horrible conflict by appeasing an evil ideology. So these soldiers took on the responsibility because it had become necessary.
Soldiers are personally risking all they have, meaning their lives, to protect us. It is important to acknowledge that with gratitude, to remember the unlucky ones who couldn’t return home, and to honor their accomplishments for at least a few minutes between festivities.

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.

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.

Autism and Shyness

In friendship, like many autistic people, I am sort of shy. I saw a friend the other day who was meeting some new people. He covered his face and hid in his jacket. I used to do that sometimes when I was small. Sometimes I even hid in my closet when a lot of company came over.

Though I don’t hide anymore, I’m still shy. I hide in myself. People hide in their stims too, or by leaving the room. It’s anxiety, I think, not stupidity or indifference to people. It’s sensory overwhelming sensations that  come in strong emotions.

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?

The Open-Minded Autism Researcher

I had a cool experience last night. It helped me think in a new way about my illness. I am still mulling it over. I will write some more ideas soon. The experience was a meeting at my home with a neuro-scientist who researches autism. He lives far from me so we have e-mailed but never met in person. He asks me a lot of hard questions about my thinking processing, my visual perceptions, my ability to control my body, and so on.

Overcoming autism means we people with the ability to describe it from the inside out to people doing important research is only right. It is sort of an intense experience to hear about new theories about what they think may be wrong in my brain, but I’m thrilled to meet an open-minded thinker.

Me and the Great TV Chefs

I love watching cooking shows. It’s very soothing. I imagine how delicious the recipes are. I enjoy certain chefs in particular. Jacques Pepin, Ming Tsai and Lorenza deMedici stimulate intellectually as well as treat me to wonderful imaginary meals. I can watch them over and over.
On the other hand, I can’t bear to watch the shows like “Hell’s Kitchen”. I think cooking is so insulted by his swearing and abuse. I love to see an artist like Jacques Pepin create beautiful tasting and looking cakes and other dishes. I think he inspired a generation of chefs. He showed my family many cooking tricks too. The weird thing is, he is an artist, only his art form is edible. I am interested in cooking and I enjoy eating too- ha ha. With all my watching the chefs I started inventing my own recipes too, which I get to imagine a lot.
Unlike a lot of autistic people, I enjoy a variety of foods. I do know people who eat like three items only. Most of it is bland or starchy. I wish they could try some new food and discover it anew. It’s so tiresome in autism how people limit themselves. This happens in food, movies, music, experiences. I think it would help to be served new foods early and often to prevent the tradition of eating just one item from developing. 


Big Speech, Big Jitters

I had so much homework, it was nuts. These days I am swamped, but I’ll try to write soon.
I will be writing a new speech to deliver at a conference for the Autism Society next week. It’s a big one for me with lots of professionals, and I’ll be the only kid there.
I love the opportunity to get my message heard. Any tips on handling stagefright are welcome.

The Benefit of Dogs for Autistic People

 I think people should have pets if they can. I know that old people who live alone do better if they have a pet. I have a lot of pets, plus we took in two abandoned puppies to foster til they were adopted in the summer. That was so fun I would love to do it again. They were stuck in a plastic bag and dumped in an alley.  They were so unlucky to be born to a cruel home, lucky to be found and rescued, and even super lucky to find wonderful homes.
In my case, animals are such good friends. They tolerate, accept, love, and never judge. It isn’t a dog’s character to reject someone because he can’t talk well or because he stims. In this way dogs are our superiors. They are not judgmental. They don’t harbor prejudice. My old dog used to sleep in my room if he noticed I was sad. My sweet shepherd really watches me to see I’m with the group. If I lag she stops walking til I catch up.
I also think dogs force me to deal with noise and unpredictable actions. I am sure this has helped me in life. I think they have taught me a lot. It is interesting how many autistic people have dog phobia. If you are autistic I think dogs should be introduced when you are young. Then the symptoms of terror never develop. I think if we didn’t have dogs when I was so young I would be phobic too. Now I can see how they helped me. It’s interesting in so many ways how they did.
The truth is cats are cool too, but not as loving. I didn’t learn so much about me from cats, but I did learn worlds of stuff from dogs. I learned toleration of noise and change. I learned that I am loved in spite of my disability by them. I learned that loyalty is important, to love long walks, and that I can control a large dog on a walk. This gives me confidence.
See you soon.

The Rattlesnakes of the Trails

I love the weather beaten trails near my home. Old California oaks and tall waving grass. On a spring day on the trails I see wildflowers, hawks stimming on thermal currents, and sometimes we see a coyote staring at us. 
The truth is I get worried about our smallest dog. She is a good meal for a coyote, but they leave us alone. The two big dogs are like bodyguards. Ha ha. Last time we saw a baby rattlesnake in the middle of the path. Now it is rattlesnake season so I hear the snakes in my mind. I think I’ll wait til winter to hike there again.
A snake bit my old dog about six years ago. The dog started sticking his nose in the grass to check out the rattling sound. Not a super bright dog. Then my dad had to jog out with him on his back to help him survive. That was an adventure I don’t want to repeat. He eventually lived to be an old dog, though never a smart one.
In summer I prefer the cool ocean.