I correspond with a neuroscientist about autism. He asks me questions about things regarding autistic behavior to help explain what we think on the inside. I find many interpretations are incorrect but few experts ask me or people like me to explain. I guess it is hard because we often can’t communicate so they have to get information from doing trial and error or interviewing Asperger’s people. I feel both have led researchers astray.
Observations may show the result but miss the cause. Asperger’s is also a trial. It isn’t my trial, however. Recently I was interviewed by a filmmaker with Asperger’s. He was surprised at every answer I gave. This tells me that autism like mine and Asperger’s like his are fundamentally different in so many ways, and if researchers turn to people like him to explain the way people like me act they may interpret my behavior for his condition.
I am so grateful to be part of the solution now and to help researchers think differently about why we autistic non-verbal people act as we do. The worst frustration is to be misunderstood and I hope my book will shed light on what autism is for many of us.
I am an autistic guy with a message. I spent the first half of my life completely trapped in silence. The second - on becoming a free soul. I had to fight to get an education. Now I am a regular education student. I communicate by typing on an iPad or a letter board. My book, "Ido in Autismland" is now available on Amazon. It is an autism diary, telling the story of my symptoms, education, and journey into communication. I hope to help other autistic people find a way out of their silence too.
Wednesday, December 28, 2011
Friday, December 23, 2011
Stims, Tics, and Freedom
I wish I could stop the majority of my stims. It is sort of weird to imagine my life without the stim in charge of my impulses. It is hard to explain what it feels like to people who have never stimmed, though perhaps you can imagine if you have tics or weird habits that are hard to stop. I see kids playing with their hair, gum, biting their nails. These are stim-like, though not as compelling, I’m sure. Stims are not conscious. They are relaxing, distracting, or invigorating depending on which one it is. Some are entertainment stims too.
The problem with stims us that they make me and other autistic people remote, detached, and hard to connect to. I think this is how stims are different than biting nails, for example, which is a habit. Biting nails isn’t a doorway into another realm, but stims are. It is the reason why I find it hard to eliminate them from my life.
They are compelling, tempting, and easily accessed. To resist is hard beyond imagining. I think I’d love to have just one stim free day to have a respite and see what life can be without stims in it. Would it be boring or flat, or just calmer? I don’t know. I guess I would quickly adjust to a new way if it was available, but it isn’t as of yet.
The problem with stims us that they make me and other autistic people remote, detached, and hard to connect to. I think this is how stims are different than biting nails, for example, which is a habit. Biting nails isn’t a doorway into another realm, but stims are. It is the reason why I find it hard to eliminate them from my life.
They are compelling, tempting, and easily accessed. To resist is hard beyond imagining. I think I’d love to have just one stim free day to have a respite and see what life can be without stims in it. Would it be boring or flat, or just calmer? I don’t know. I guess I would quickly adjust to a new way if it was available, but it isn’t as of yet.
Tuesday, December 20, 2011
Hills in Seismic Country
I love hills and folded rows of land nestled in our valley. Seismic movements created this rippled landscape. I imagine the power of the seismic energy when I see these crumpled mounds of earth in the trails. It is clear a tremendous pressure has been quietly at work here, and looming is a big jolt one day too. The hills are innocently waiting to be disrupted again. They don't anticipate becoming taller or more crumpled so they have trees of oak on them, shrubs, and waving grass. Birds innocently hop in and out of the shrubs and the coyotes stand watching on the hilltops, hoping to get a rabbit or squirrel. The path is muddy from rain a week ago in the shady spots, and the sunny spots show dried horse hoof prints, mountain bike tire prints, and the sure proof that dogs have gone by, not to mention deer and owls too. The wind rushes through the canyons and my ears are overwhelmed so I walk with my hands on my ears when that happens. It is a tease because I know around the bend it will stop, the sun will be out, and the breeze will be quiet again. On the path I feel calm.
Sunday, December 18, 2011
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.
Tuesday, December 13, 2011
Lizard Brain
Autism is a very frustrating disorder. I can be totally impulsive. I get foods I shouldn't take. I see it. I take it. No thought at all. I see things I want to spill or spray or touch. No thought at all. It is my lizard brain. It is almost reflexive. I think eventually, when I am caught. Then my reasoning is totally stung with remorse. I hate my impulsive actions.
I live in a dual world. On the one hand I have an intelligent mind and I think deeply. On the other hand, I only react to impulses, like a lizard chasing a cricket. Maybe neurologists or neuro-scientists can figure this one out. My whole life is extremes. I am intelligent but I am not able to speak or write like a teen. I can't even speak as well as a kindergartner. I am impulsive like a baby, but I am a religious thinker like an adult.
Autism is a wild ride. I think it is sort of a blessing to think deeply like I do, but it is so grating to follow my lizard brain as well. I wish I could figure out how to get mastery over it because people rightly get angry and I seem selfish.
I live in a dual world. On the one hand I have an intelligent mind and I think deeply. On the other hand, I only react to impulses, like a lizard chasing a cricket. Maybe neurologists or neuro-scientists can figure this one out. My whole life is extremes. I am intelligent but I am not able to speak or write like a teen. I can't even speak as well as a kindergartner. I am impulsive like a baby, but I am a religious thinker like an adult.
Autism is a wild ride. I think it is sort of a blessing to think deeply like I do, but it is so grating to follow my lizard brain as well. I wish I could figure out how to get mastery over it because people rightly get angry and I seem selfish.
Saturday, December 3, 2011
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.
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.
Friday, December 2, 2011
Thickening My Skin
I have to aim high in life. I am the same person inside I would be if I didn’t have autism. If I didn’t have autism I’d be interested in a career, an independent life, and friends. I still have these goals. School is now feeling somewhat goal oriented. What I mean is, high school is necessary to do what I want in life. My goal is to get a college education and to work after that in education and autism, so high school is a step toward all that.
My high school is forcing me to toughen up. In the beginning I was miserable because I suspected I was not welcome. I have come to the conclusion that I really don’t need to be welcome in order to succeed. Why should I worry if everyone likes me in the school or not? The truth is, I am a really visible presence because I am so different. I am somehow learning not to be a sensitive guy about this. If I am to face the whole world of special educators I better get a thick skin.
I wrote recently about how irritated I was by a woman who was shocked I understood English fluently even after I presented to an audience. To her credit she grew and learned from our interaction. That was wonderful and I give her credit for opening her mind. I was interviewed recently by medical students who were surprised to find a bright mind behind my symptoms. They were kind and open-minded and the professor told me they learned to not judge a book by its cover. Since my cover is Autismland I know some people can’t see what is inside, but that is not my limitation. It’s theirs.
The reality is that differences scare people. It isn’t just autism. It can be physical, or cultural, or whatever. In any case, the odd man out is either welcomed by people or treated in a cold and rejecting manner. I have to realize it is individuals who are reacting to me in the best way they understand. When people have pre-judgments I must grow in my maturity. The saying is, “from adversity we get strength”, so I will try to do that.
My high school is forcing me to toughen up. In the beginning I was miserable because I suspected I was not welcome. I have come to the conclusion that I really don’t need to be welcome in order to succeed. Why should I worry if everyone likes me in the school or not? The truth is, I am a really visible presence because I am so different. I am somehow learning not to be a sensitive guy about this. If I am to face the whole world of special educators I better get a thick skin.
I wrote recently about how irritated I was by a woman who was shocked I understood English fluently even after I presented to an audience. To her credit she grew and learned from our interaction. That was wonderful and I give her credit for opening her mind. I was interviewed recently by medical students who were surprised to find a bright mind behind my symptoms. They were kind and open-minded and the professor told me they learned to not judge a book by its cover. Since my cover is Autismland I know some people can’t see what is inside, but that is not my limitation. It’s theirs.
The reality is that differences scare people. It isn’t just autism. It can be physical, or cultural, or whatever. In any case, the odd man out is either welcomed by people or treated in a cold and rejecting manner. I have to realize it is individuals who are reacting to me in the best way they understand. When people have pre-judgments I must grow in my maturity. The saying is, “from adversity we get strength”, so I will try to do that.
Sunday, November 27, 2011
The Benefit of the Doubt
Sometimes I read about other people and their challenges. It often gives me hope. This is a quote from Gabrielle Giffords new book about her brain trauma and rehabilitation.
“In the first weeks after Gabby was injured, she couldn’t say anything at all, which left her terribly scared. She felt trapped inside herself. By mid-February, Gabby had begun formulating words, but they were often delivered haltingly or incorrectly. Her speech therapist handed her a photo of a chair and asked her what she was looking at.
“Spoon,” Gabby said. “Spoon.”
When shown a lamp, Gabby said, “cheeseburger.”
She also got stuck on random words. No matter what she meant to say, the same word, “chicken,” often came out in a burst: “Chicken, chicken, chicken.”
For Gabby it was almost unbearably frustrating.”
Oh, does this ever sound familiar. It is interesting how Gabrielle Giffords got the benefit of the doubt. Pretty soon she got better too, so she is extremely fortunate. In autism we kind of live there all our lives. Each neurological challenge is different, but autism does not get the benefit of the doubt. People assume we get the word wrong because we don’t know the word. It isn’t true in my case. Is it possible in others? What do you think? Do autistic people deserve the benefit of the doubt too?
“In the first weeks after Gabby was injured, she couldn’t say anything at all, which left her terribly scared. She felt trapped inside herself. By mid-February, Gabby had begun formulating words, but they were often delivered haltingly or incorrectly. Her speech therapist handed her a photo of a chair and asked her what she was looking at.
“Spoon,” Gabby said. “Spoon.”
When shown a lamp, Gabby said, “cheeseburger.”
She also got stuck on random words. No matter what she meant to say, the same word, “chicken,” often came out in a burst: “Chicken, chicken, chicken.”
For Gabby it was almost unbearably frustrating.”
Oh, does this ever sound familiar. It is interesting how Gabrielle Giffords got the benefit of the doubt. Pretty soon she got better too, so she is extremely fortunate. In autism we kind of live there all our lives. Each neurological challenge is different, but autism does not get the benefit of the doubt. People assume we get the word wrong because we don’t know the word. It isn’t true in my case. Is it possible in others? What do you think? Do autistic people deserve the benefit of the doubt too?
Friday, November 25, 2011
Welcome
It is so nice to see so many new readers having a look at my blog. I want to thank Autism Speaks for linking to my last essay. You can also check out my facebook page (idoinautismland) and give it a "like", and I am also on twitter. I don't have much to say today other than welcome to my blog, and I will post soon when I have more time.
Monday, November 21, 2011
Thoughts for Thanksgiving
It is almost Thanksgiving. Thanksgiving is one of my favorite holidays. Each year we have a turkey feast with a large gathering of relatives. Sometimes the weather is mild and we eat outside. This year it is already the wettest Thanksgiving season I can remember. I seasonally enjoy all my holidays. They get so associated with weather and seasonal foods, if I moved to Alaska it would be weird to have a snowy holiday, or in Hawaii, a beachy one.
The thing is, being the serious sort I am, I like to think about the reason for a holiday. In the case of Thanksgiving, it is to stop and remember that we have good luck in the fact that we live in a beautiful and free land. Often people forget to notice good fortune. They notice bad right away because they assume good fortune is the norm in life. It’s not. In fact, few people are as lucky as we are with no hungry nights, a full pantry, school, choices in life, and the freedom to have a say in and even dispute our leaders. There are a lot of people who enjoy none of that, so I try not to have a too casual appreciation of my luck in that.
To have autism in this land is even luckier. I am fully aware of how my life would have been if I had been born as strange as I am, in desperate poverty in a place that stigmatized the disabled as cursed. My shame would be to be hidden from sight, or tied to a rope, or institutionalized. In many places this occurs today. While I struggle mostly to help autistic people get a better life, I hope that those who live in these harsh conditions will have better lives too.
Wishing you all a wonderful and grateful Thanksgiving.
The thing is, being the serious sort I am, I like to think about the reason for a holiday. In the case of Thanksgiving, it is to stop and remember that we have good luck in the fact that we live in a beautiful and free land. Often people forget to notice good fortune. They notice bad right away because they assume good fortune is the norm in life. It’s not. In fact, few people are as lucky as we are with no hungry nights, a full pantry, school, choices in life, and the freedom to have a say in and even dispute our leaders. There are a lot of people who enjoy none of that, so I try not to have a too casual appreciation of my luck in that.
To have autism in this land is even luckier. I am fully aware of how my life would have been if I had been born as strange as I am, in desperate poverty in a place that stigmatized the disabled as cursed. My shame would be to be hidden from sight, or tied to a rope, or institutionalized. In many places this occurs today. While I struggle mostly to help autistic people get a better life, I hope that those who live in these harsh conditions will have better lives too.
Wishing you all a wonderful and grateful Thanksgiving.
Wednesday, November 16, 2011
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.
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.
Saturday, November 12, 2011
New Ideas
I read this article today in the Wall Street Journal. It describes how the usual pattern for reacting to new ideas is to dismiss them. Earning credibility is hard when systems have invested in maintaining the status quo. The article cites resistance to plate tectonics, new medical ideas, and some other theories later proven to be right, and it also mentions that many new ideas are also wrong.
Sometimes well-meaning people follow a wrong theory for years. It is always interesting when the theory is disproved. All those lives that were negatively affected by the theory are now told, "Oops".With ulcers my grandfather had part of his stomach surgically removed. Now they know it's a virus. Oops. Weird theories in child-rearing, and education, and mental health are now disproved and some theories popular now will be disproved in the future, but we can't know ahead of time which is wacky, which works, and mostly how to stand up to the naysayers.
In the fifties people were sure autism was a sign of emotional neglect on the part of a cold "refrigerator" mother. This idea was miserable for mothers and autistic kids. I suspect that when new theories that viewed autism as a neurological illness came out that many mental health therapists who were making a living on treating autism with emotionally-focused therapy resisted the new ideas because they were invested in their theory.I think it is still the same today with the popular theories and new ways of seeing autism, but I think it is starting to change gradually, and I am so grateful to Soma for being one of the intellectual heretics who is right.
Sometimes well-meaning people follow a wrong theory for years. It is always interesting when the theory is disproved. All those lives that were negatively affected by the theory are now told, "Oops".With ulcers my grandfather had part of his stomach surgically removed. Now they know it's a virus. Oops. Weird theories in child-rearing, and education, and mental health are now disproved and some theories popular now will be disproved in the future, but we can't know ahead of time which is wacky, which works, and mostly how to stand up to the naysayers.
In the fifties people were sure autism was a sign of emotional neglect on the part of a cold "refrigerator" mother. This idea was miserable for mothers and autistic kids. I suspect that when new theories that viewed autism as a neurological illness came out that many mental health therapists who were making a living on treating autism with emotionally-focused therapy resisted the new ideas because they were invested in their theory.I think it is still the same today with the popular theories and new ways of seeing autism, but I think it is starting to change gradually, and I am so grateful to Soma for being one of the intellectual heretics who is right.
Thursday, November 3, 2011
My Speech at the Vista del Mar Autism Conference
I am honored to speak here today. I know some of you are professionals working in autism, and some of you are parents, and even a few of us here actually have autism. So I will represent the point-of-view of someone who has unfortunately lived with autism since the first moment of life.
It aint easy.
It’s hard on parents and I see the sadness and struggle of them all the time. It’s a true challenge to have a child who can’t do normal tasks, does odd self-stimulatory behavior in all the worst moments, can’t communicate in words, signs, or even gesture their deeper thoughts, and needs constant supervision. So I have empathy for what parents go through. The worst for parents is never knowing if your non-verbal child is understanding and thinking at a normal level. It leaves parents talking simply- as they have been advised- to help their child with basic concepts. The child is never fully communicating in sign, or Pecs, or even speech, so it is a really hard situation for families.
The autistic person has a different challenge. Recently the news was about an Israeli soldier held prisoner in a dungeon in Gaza for nearly six long years with no communication with the outside world at all. I thought about how awful it would be to be a captive cut off from life and sun and kindness with no certainty of surviving or being freed.
Now, autism isn’t a matter of life or death, but it is a prison that won’t let us talk to the outside world and we have no certainty of ever being freed. I brought up the analogy because I think people can imagine more easily being a captive of cruel terrorists than of being a captive of your own body. So, you need to try to imagine my situation as a young non-verbal boy with no way to express my ideas and see that it was like a nightmare. Not only was my mind fully present and understanding everything, but I read fluently. I thought of retorts, jokes and comments all day long in my head. Only no one else knew.
So, I was talked to like a toddler, not given a real education, and kept bored and sad. This changed when I was finally taught how to get my thoughts out. The liberation was as remarkable as the freeing of this poor captive.
It’s true that I stay tied to autism still. It is with me every moment of my life. It is not a liberation from autism to be able to communicate or get an education. However, it is a liberation from its isolation. My typing and my pointing to letters have enabled me to be a free soul.
I go to a regular high school all day. I go to regular classes too and I do regular homework, and so on. I may challenge the teachers because I behave oddly at times, though I am actually working super hard, but I learn, get good grades, and intend to graduate, go to college, and live a kind of, sort of, normal life. Kind of, sort of, because autism is a barrier to normal anything.
Being autistic is a major challenge. It is the biggest hurdle because it is pervasive, very misunderstood, and incorrectly worked with in too many cases.
When I was twelve I started writing about living with autism. Soon I hope my essays will be available to you in a book that will explain a lot of the behaviors and inner experiences of the person with autism who can’t communicate.
If you check out my blog, www.idoinautismland.com, or follow me on twitter or facebook, you will be alerted to when it is ready to purchase. My goal is to help you parents connect to your children in real communication, and to help professionals understand the real experiences of your clients, and to burst open the prison door of my fellow travelers in Autismland.
Thank you for your time today.
It aint easy.
It’s hard on parents and I see the sadness and struggle of them all the time. It’s a true challenge to have a child who can’t do normal tasks, does odd self-stimulatory behavior in all the worst moments, can’t communicate in words, signs, or even gesture their deeper thoughts, and needs constant supervision. So I have empathy for what parents go through. The worst for parents is never knowing if your non-verbal child is understanding and thinking at a normal level. It leaves parents talking simply- as they have been advised- to help their child with basic concepts. The child is never fully communicating in sign, or Pecs, or even speech, so it is a really hard situation for families.
The autistic person has a different challenge. Recently the news was about an Israeli soldier held prisoner in a dungeon in Gaza for nearly six long years with no communication with the outside world at all. I thought about how awful it would be to be a captive cut off from life and sun and kindness with no certainty of surviving or being freed.
Now, autism isn’t a matter of life or death, but it is a prison that won’t let us talk to the outside world and we have no certainty of ever being freed. I brought up the analogy because I think people can imagine more easily being a captive of cruel terrorists than of being a captive of your own body. So, you need to try to imagine my situation as a young non-verbal boy with no way to express my ideas and see that it was like a nightmare. Not only was my mind fully present and understanding everything, but I read fluently. I thought of retorts, jokes and comments all day long in my head. Only no one else knew.
So, I was talked to like a toddler, not given a real education, and kept bored and sad. This changed when I was finally taught how to get my thoughts out. The liberation was as remarkable as the freeing of this poor captive.
It’s true that I stay tied to autism still. It is with me every moment of my life. It is not a liberation from autism to be able to communicate or get an education. However, it is a liberation from its isolation. My typing and my pointing to letters have enabled me to be a free soul.
I go to a regular high school all day. I go to regular classes too and I do regular homework, and so on. I may challenge the teachers because I behave oddly at times, though I am actually working super hard, but I learn, get good grades, and intend to graduate, go to college, and live a kind of, sort of, normal life. Kind of, sort of, because autism is a barrier to normal anything.
Being autistic is a major challenge. It is the biggest hurdle because it is pervasive, very misunderstood, and incorrectly worked with in too many cases.
When I was twelve I started writing about living with autism. Soon I hope my essays will be available to you in a book that will explain a lot of the behaviors and inner experiences of the person with autism who can’t communicate.
If you check out my blog, www.idoinautismland.com, or follow me on twitter or facebook, you will be alerted to when it is ready to purchase. My goal is to help you parents connect to your children in real communication, and to help professionals understand the real experiences of your clients, and to burst open the prison door of my fellow travelers in Autismland.
Thank you for your time today.
Saturday, October 22, 2011
Autism and Adolescence
Being a teenager is hard. Hormones cause mood swings and irritability. I guess it is worse in autism because our regulation of our emotions is weak. I often feel edgy and I know I am that way for nothing. It is the way I handle it though that makes a hormonal mood swing into a behavior problem. I believe I am feeling the same as all teens only I can’t control my actions as well as they do. Like them I am irritable and sort of moody and impulsive. Unlike them, I can’t cover it up so easily. I’m like a dog who snarls. They cuss and say rude things. I tense in my body. They bother others by teasing or bullying. It is a trying episode and I look forward to adulthood when I can feel calmer and more like a stable state than I do now. It is a thing we all get through so I guess I have a few more years of this.
Saturday, October 15, 2011
The Lure of Stims
In the past I internally lived in stims. The stim was entertainment, escape, compulsion, and the easiest way to deal with the frustrations of autism. It is like an alcoholic who runs to a bottle whenever he is sad or tense. It is a way to avoid working on things. It really makes the situation worse though. It is also unfair to the rest of the people who interact with the stimming person because he puts his challenges on them. In my Health class we are learning about drug abuse and alcoholism. I can’t help but see a similarity in autistic stims.
In the first place, a stim is a sensory trip of enjoyable feelings. It may start small but it can take over your life- not so much life, but all you do is less important than the stim itself if it is compelling. So, it is an escapist drug and it is addictive. I used to stim a lot as a young boy, especially before I could communicate. Now I stim less because I am engaged in life at a normal level, so I stay in the world as much as I can. I am thrilled about that because I don’t want to live in Autismland flapping, tensing, and twirling my life away. It is hard but I am happy in school listening and learning. I may miss out on the social aspect of high school because I don’t have friends in high school- none of the disable kids really do, I’ve noticed- but I do have a normal day of regular classes and regular homework and exercise and so on.
But stims are there tempting me. I get stressed or bored so I return to my trusty alternative to reality. Stims are a necessary outlet at times but they have to be in moderation. If not we become drunk on them and it’s too hard to return to some self control. We need a lot of help in these times and lots of activity to keep our minds engaged.
In the first place, a stim is a sensory trip of enjoyable feelings. It may start small but it can take over your life- not so much life, but all you do is less important than the stim itself if it is compelling. So, it is an escapist drug and it is addictive. I used to stim a lot as a young boy, especially before I could communicate. Now I stim less because I am engaged in life at a normal level, so I stay in the world as much as I can. I am thrilled about that because I don’t want to live in Autismland flapping, tensing, and twirling my life away. It is hard but I am happy in school listening and learning. I may miss out on the social aspect of high school because I don’t have friends in high school- none of the disable kids really do, I’ve noticed- but I do have a normal day of regular classes and regular homework and exercise and so on.
But stims are there tempting me. I get stressed or bored so I return to my trusty alternative to reality. Stims are a necessary outlet at times but they have to be in moderation. If not we become drunk on them and it’s too hard to return to some self control. We need a lot of help in these times and lots of activity to keep our minds engaged.
Sunday, October 9, 2011
Helen Keller and Annie Sullivan
Helen Keller was a great woman. Now she is a hero for showing the world that severe disability doesn't mean a life of ignorance and institutionalization. In her time that was a radical concept. She was incredibly determined to live a normal life and she worked so hard to achieve her goals. She learned five languages in fingerspelling. She learned to speak though she couldn't hear her own voice, the sounds of the words, or even lipreading the movements of speech. It is an incredible achievement in my opinion.
Her teacher, Annie Sullivan, was incredible too. She stayed with Helen for fifty years. I was amazed because my own aides last about two or three years before they move on to grad school, motherhood, or new jobs. Not only that, but Sullivan was also visually impaired. She still assisted Helen in school and out. So, Annie Sullivan was also a disabled hero.
What creates such motivation as both women had? Is it friendship, intelligence, or some divine talent? I work hard though Helen worked harder. She worked so hard to prove she deserved her place in the sun. She showed what hard work can do. Instead of a life in an institution, wild and locked in, completely cut off from communication, she became a star of the world, giving hope to millions, and giving herself the gift of freedom. She did this in spite of having a lonely disability that cut her off from conversation and sight. In fighting for herself, she fought for me and many others too. Maybe one day I will be a real leader like her.
Her teacher, Annie Sullivan, was incredible too. She stayed with Helen for fifty years. I was amazed because my own aides last about two or three years before they move on to grad school, motherhood, or new jobs. Not only that, but Sullivan was also visually impaired. She still assisted Helen in school and out. So, Annie Sullivan was also a disabled hero.
What creates such motivation as both women had? Is it friendship, intelligence, or some divine talent? I work hard though Helen worked harder. She worked so hard to prove she deserved her place in the sun. She showed what hard work can do. Instead of a life in an institution, wild and locked in, completely cut off from communication, she became a star of the world, giving hope to millions, and giving herself the gift of freedom. She did this in spite of having a lonely disability that cut her off from conversation and sight. In fighting for herself, she fought for me and many others too. Maybe one day I will be a real leader like her.
Thursday, October 6, 2011
Travelling Around the Sun
Pretty soon the weather will get cool. It is the cycle of life. Here we only have two seasons, hot and cool. In the northeast the four seasons are distinct. Each is a transition to the next. I envy those who enjoy the fall leaves and snow because these are beautiful parts of the seasons I don't experience here. But I suppose I'd get sick of freezing every winter too just like I get sick of the heat.
In the seasons we get a new beginning, a new ending, on and on. The weather tells me to bid farewell to swimming. The ocean is too cold unless I have a wetsuit on. It's going to be a new trip around the sun.
In the seasons we get a new beginning, a new ending, on and on. The weather tells me to bid farewell to swimming. The ocean is too cold unless I have a wetsuit on. It's going to be a new trip around the sun.
Sunday, October 2, 2011
Electricity in Autismland
I noticed that I get really nervous before I give a speech. I suppose that’s normal but the truth is I felt so scared it kind of took over. I found old stims that were gone for years reappeared. My mom kept bringing this to my attention and kept saying, “Don’t bring back something you overcame just because you’re nervous.”
She is right. It is so easy to slip into bad habits. I bothered my mom and dad with remote, non-engaged laughter. They had to struggle to get me to focus. It was like a motor car rolling downhill with broken brakes. It was not pleasant for me either.
Autismland offers an escape from my stress, but it creates stress for everyone else. I’m overly stimmy if I’m nervous like over-charged electrical energy. How to deal with this is my life’s struggle. I did get it together for my big speech. I was calm the whole time, but leading up to it I was an electrical current that was out of whack. Really I feel much better now. It is very tiring to be stuck on a current of energy. I exercised and we walked. That helped, but it is like this: I will need help either from neuroscientists or electricians. Ha ha.
She is right. It is so easy to slip into bad habits. I bothered my mom and dad with remote, non-engaged laughter. They had to struggle to get me to focus. It was like a motor car rolling downhill with broken brakes. It was not pleasant for me either.
Autismland offers an escape from my stress, but it creates stress for everyone else. I’m overly stimmy if I’m nervous like over-charged electrical energy. How to deal with this is my life’s struggle. I did get it together for my big speech. I was calm the whole time, but leading up to it I was an electrical current that was out of whack. Really I feel much better now. It is very tiring to be stuck on a current of energy. I exercised and we walked. That helped, but it is like this: I will need help either from neuroscientists or electricians. Ha ha.
Sunday, September 25, 2011
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.
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.
Thursday, September 22, 2011
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.
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.
Saturday, September 17, 2011
Autism and Friendship
In friendship there is give and take, easy talk, shared interests, and socializing. I see the way my sister is with her friends. I can’t do what they do. I’m not referring to girl stuff. I mean the social stuff they do.; talking on the phone, sports, texting, meeting at each other’s homes, malls, and all the rest. How is an autistic person who is not verbal, limited in initiation, independence, and the rest, going to do that? We have an isolating illness. It stops us from doing the normal social things and it makes people want to avoid us too because we are so different and so hard to engage.
I have a few suggestions for how to be a friend to an autistic person.
-Don’t patronize, even if the person seems “low-functioning”. Who knows what is trapped inside?
-Stay friendly and say “hi” even if the autistic person is not animated in expression or doesn’t say “hi” first.
-Try to imagine what non-verbal messages the person is communicating in behavior.
-Help them stop if they get too stimmy.
-Connect in the ways you can.
I see some people are able to reach through the barrier with autistic people. They are energetic, friendly, not putting up with aggressive or bad behavior, positive and calm. The worst traits for an autistic person to be around are the opposite; lazy, grumpy, weak and afraid to set limits, negative and tense. I mean, who likes being with negative, grumpy people? But in autism we get so affected by the moods of others. I think friendship is different in autism. I am friends with people without socializing in the normal way, but I hope one day my skills will improve.
I have a few suggestions for how to be a friend to an autistic person.
-Don’t patronize, even if the person seems “low-functioning”. Who knows what is trapped inside?
-Stay friendly and say “hi” even if the autistic person is not animated in expression or doesn’t say “hi” first.
-Try to imagine what non-verbal messages the person is communicating in behavior.
-Help them stop if they get too stimmy.
-Connect in the ways you can.
I see some people are able to reach through the barrier with autistic people. They are energetic, friendly, not putting up with aggressive or bad behavior, positive and calm. The worst traits for an autistic person to be around are the opposite; lazy, grumpy, weak and afraid to set limits, negative and tense. I mean, who likes being with negative, grumpy people? But in autism we get so affected by the moods of others. I think friendship is different in autism. I am friends with people without socializing in the normal way, but I hope one day my skills will improve.
Saturday, September 10, 2011
Letter to My Teachers
Dear Teachers;
I started High School with several big challenges. The challenges are why I am easily the most different kid you have in your classes. I have a serious neurological difference. Recently a neuroscientist I know told me that it is theorized that autistic people have a surplus of neurons. Our brains don’t prune properly. The result is a communication interference between thought and action. This is why I don’t speak with my mouth or why my writing is messy. It is also why I am impulsive or emotional with poor brakes. It is awful for me to sometimes be the follower of my actions. I am struggling daily to master them.
The second challenge is attacks of anxiety. In autism we often are anxious, nervous, and worried. That’s when things are good. In real stress we sometimes are overwhelmed. Starting High School was really overwhelming and I lost my self-control. I am trying so hard to do well and I hope you see I am improving. I regret any disruption I caused and I will try to be a more relaxed student in the future.
One additional stress was that I was not with the right aide at the start of the school year. I think I need to work on finding good matches who help me stay calm. I have this now with Cathy. I did not have that before so I became stressed and even frightened.
I want you all to know that my education is a thing I value very much. It is challenging to be the only autistic kid like me in school. I know other students have autism but they are verbal or with less severe symptoms. Now I struggle to show that people like me can be educated too. I think the vast majority of people with my degree of autism have only a simple and very basic education of alphabet, arithmetic, and not much more. It was my good fortune that I was able to learn to communicate on letter board or computer with my one finger. Thanks to that, my education is possible. It liberated me from total isolation.
I know you are all busy and I appreciate you welcoming me to your classes. I realize you may get worried about whether I do my own work. I do all the thinking work but I don’t do the hand-writing. I invite you to watch me on my letter board and see for yourself how it is done. I have had several teachers do this. It is helpful to see I work on my own assignments, moving my own arm, and not being manipulated. I would be happy to show you any time you wish to observe.
Sincerely,
Ido
I started High School with several big challenges. The challenges are why I am easily the most different kid you have in your classes. I have a serious neurological difference. Recently a neuroscientist I know told me that it is theorized that autistic people have a surplus of neurons. Our brains don’t prune properly. The result is a communication interference between thought and action. This is why I don’t speak with my mouth or why my writing is messy. It is also why I am impulsive or emotional with poor brakes. It is awful for me to sometimes be the follower of my actions. I am struggling daily to master them.
The second challenge is attacks of anxiety. In autism we often are anxious, nervous, and worried. That’s when things are good. In real stress we sometimes are overwhelmed. Starting High School was really overwhelming and I lost my self-control. I am trying so hard to do well and I hope you see I am improving. I regret any disruption I caused and I will try to be a more relaxed student in the future.
One additional stress was that I was not with the right aide at the start of the school year. I think I need to work on finding good matches who help me stay calm. I have this now with Cathy. I did not have that before so I became stressed and even frightened.
I want you all to know that my education is a thing I value very much. It is challenging to be the only autistic kid like me in school. I know other students have autism but they are verbal or with less severe symptoms. Now I struggle to show that people like me can be educated too. I think the vast majority of people with my degree of autism have only a simple and very basic education of alphabet, arithmetic, and not much more. It was my good fortune that I was able to learn to communicate on letter board or computer with my one finger. Thanks to that, my education is possible. It liberated me from total isolation.
I know you are all busy and I appreciate you welcoming me to your classes. I realize you may get worried about whether I do my own work. I do all the thinking work but I don’t do the hand-writing. I invite you to watch me on my letter board and see for yourself how it is done. I have had several teachers do this. It is helpful to see I work on my own assignments, moving my own arm, and not being manipulated. I would be happy to show you any time you wish to observe.
Sincerely,
Ido
Sunday, September 4, 2011
Professional Guessing
I read this story in the Wall Street Journal.
and it probably describes feelings that other parents can relate to. The boy has very different symptoms from me so of course his story is different too, but I see how hard parents work on dealing with behaviors they don’t understand. I see how they seek answers from experts.
The part of the article I want to comment on is what the autism specialist told the father about his son. The insight the father received is interesting. He is told that his son perceives the world in fragments. In my opinion, the expert is giving an insight based on conjecture. How is she able to determine that the boy is perceiving reality in fragments? I don’t perceive in fragments, though my sensory system isn’t normal. I think autism has a lot of experts who guess a lot.
I am thinking that maybe I don’t have a title, but I am an expert in autism. I could tell the expert the struggle of autism from my own experience. I didn’t read textbooks in autism to help me tell others what autism is. I live autism. I see the world in autistic eyes. I have had so many theories all my life that severely impacted my life. I would say that many were totally fantasy.
I hope soon I can publish my book and tell about autism from the inside out.
and it probably describes feelings that other parents can relate to. The boy has very different symptoms from me so of course his story is different too, but I see how hard parents work on dealing with behaviors they don’t understand. I see how they seek answers from experts.
The part of the article I want to comment on is what the autism specialist told the father about his son. The insight the father received is interesting. He is told that his son perceives the world in fragments. In my opinion, the expert is giving an insight based on conjecture. How is she able to determine that the boy is perceiving reality in fragments? I don’t perceive in fragments, though my sensory system isn’t normal. I think autism has a lot of experts who guess a lot.
I am thinking that maybe I don’t have a title, but I am an expert in autism. I could tell the expert the struggle of autism from my own experience. I didn’t read textbooks in autism to help me tell others what autism is. I live autism. I see the world in autistic eyes. I have had so many theories all my life that severely impacted my life. I would say that many were totally fantasy.
I hope soon I can publish my book and tell about autism from the inside out.
Friday, September 2, 2011
Autism in Disneyland
The whole world goes to Disneyland. It is an imaginative talent, to be sure. It is sort of like travel into space, or time, or into a cartoon, in between the crowds and the long lines. The last time I was there I was so sensory overwhelmed I had a feeling of real fear. I saw dark tunnels in the lines, darkness in the rides with sudden bright colors bursting out. In the really kiddy-oriented ride, Winnie-the-Pooh, I was so bombarded by bright colors in the darkness, I almost panicked. I had to control myself from fleeing.
The Pirates of the Caribbean is so dimly lit I couldn’t bring myself to even get into the boat. I know the people I was with were disappointed, but I couldn’t do it then. I wish I could because I rode it when I was little and it is a cool experience of animation in moving figures.
My favorite ride is the Jungle Cruise. It is mellow in a visual sense because it is naturalistic. I enjoy pretending I’m on a safari.
I also love the Autopia because I can pretend I’m driving even though it is easily the loudest environment imaginable. I need my headphones all day in Disneyland.
I like Tom Sawyer Island too. It is fun but my sensory system is always stopping me from doing things. I can run on the paths, bridges, and so on, but I balk at entering the caves. My mind knows they are safe. My system says, “No, no, no.”
Somehow I did the Indiana Jones ride. I can’t believe I did, in retrospect. It is dark, scary and fast- all things my system hates, but it was really exciting and I was entertained by it. It was not in bright colors so my visual field could cope. I would do it again, believe it or not.
The roller coasters scare me so much. I have the fear of flying out so I can’t ride the Matterhorn or Big Thunder Railroad. I know I won’t fly out, but I feel almost panicky even thinking about these rides.
It’s a Small World is a really terrible ordeal. The colors, lights and incessant song drive me bonkers.
The Haunted Mansion is creepy. I can do it though. It is not dark in the beginning so I can go in. Once it’s underway I am fine and it is super creative and well done.
I think I shouldn’t go to Amusement Parks because money is wasted on me. I want to do rides I can’t get myself on. I hate crowds of people and noise. I think I need the beach or trails to relax. My sister is a huge fan of Disneyland and went this week. I remember my last trip there vividly. It was so hot, crowded and noisy. I tried to cope but I struggled to enjoy myself. The conclusion I had is I can’t go if it is crowded or hot.
I know some autistic kids who love the sensory high of Disneyland. They go on roller-coasters over and over. They have sort of a drug-experience on some of the rides. In my case it is not a stream of sensory pleasure, it is an assault on my overly sensitive system. It is an amazingly creative place, but on a scale of one to ten it is an eleven in terms of sensory challenges. To give you a hint of my experience, imagine all the rides at deafening volume, the colors at dizzying intensity, the dark shadows ominously terrifying, the heat oppressively scorching, and the sea of humanity incessant. Well, that was my last trip there two years ago. Disneyland is a test of autism endurance, but it is a cool place in any event.
The Pirates of the Caribbean is so dimly lit I couldn’t bring myself to even get into the boat. I know the people I was with were disappointed, but I couldn’t do it then. I wish I could because I rode it when I was little and it is a cool experience of animation in moving figures.
My favorite ride is the Jungle Cruise. It is mellow in a visual sense because it is naturalistic. I enjoy pretending I’m on a safari.
I also love the Autopia because I can pretend I’m driving even though it is easily the loudest environment imaginable. I need my headphones all day in Disneyland.
I like Tom Sawyer Island too. It is fun but my sensory system is always stopping me from doing things. I can run on the paths, bridges, and so on, but I balk at entering the caves. My mind knows they are safe. My system says, “No, no, no.”
Somehow I did the Indiana Jones ride. I can’t believe I did, in retrospect. It is dark, scary and fast- all things my system hates, but it was really exciting and I was entertained by it. It was not in bright colors so my visual field could cope. I would do it again, believe it or not.
The roller coasters scare me so much. I have the fear of flying out so I can’t ride the Matterhorn or Big Thunder Railroad. I know I won’t fly out, but I feel almost panicky even thinking about these rides.
It’s a Small World is a really terrible ordeal. The colors, lights and incessant song drive me bonkers.
The Haunted Mansion is creepy. I can do it though. It is not dark in the beginning so I can go in. Once it’s underway I am fine and it is super creative and well done.
I think I shouldn’t go to Amusement Parks because money is wasted on me. I want to do rides I can’t get myself on. I hate crowds of people and noise. I think I need the beach or trails to relax. My sister is a huge fan of Disneyland and went this week. I remember my last trip there vividly. It was so hot, crowded and noisy. I tried to cope but I struggled to enjoy myself. The conclusion I had is I can’t go if it is crowded or hot.
I know some autistic kids who love the sensory high of Disneyland. They go on roller-coasters over and over. They have sort of a drug-experience on some of the rides. In my case it is not a stream of sensory pleasure, it is an assault on my overly sensitive system. It is an amazingly creative place, but on a scale of one to ten it is an eleven in terms of sensory challenges. To give you a hint of my experience, imagine all the rides at deafening volume, the colors at dizzying intensity, the dark shadows ominously terrifying, the heat oppressively scorching, and the sea of humanity incessant. Well, that was my last trip there two years ago. Disneyland is a test of autism endurance, but it is a cool place in any event.
Saturday, August 27, 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.
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.
Thursday, August 25, 2011
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.
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.
Wednesday, August 17, 2011
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.
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.
Friday, August 12, 2011
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.
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.
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.
Monday, August 8, 2011
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.
Wednesday, August 3, 2011
Cherishing Our Loved Ones
Monday, August 1, 2011
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.
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.
Thursday, July 28, 2011
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.
Saturday, July 23, 2011
Choosing Heroism and Harry Potter
Harry Potter is a reluctant hero. He is like a really normal guy who thanks to fate is forced into a hero role. He could have refused, but he didn’t because although inside he is an ordinary guy, he is also exceptional in bravery, stubbornness, and decency. Most heroes are like this, not seeking glory or narcissistic, they do what is right and move on in life.
I met a hero once. He was tough on the outside and war hardened in some ways, but his eyes got moist when I embraced him. He stopped being tough in that moment.
Is Harry a great person? He is a struggling person in life and internally. Not perfect. He is human. And yet, he is great in his actions. So the answer is; he is great, and a hero. Being a great person is a choice. I suppose being a good or lousy person is a choice too.
The characters that impress me most are Harry’s loyal friends, Ron and Hermione. They choose to stick with Harry though it is dangerous. To be honest, they are more heroic in a way than Harry because it is not their fate. It is their choice.
Snape is a really complex hero of sorts because he is so damaged emotionally. It’s sad to see his rage and hatred and abuse of others, though in the end his deeds save Harry. He is a negative hero because his motive is not altruistic. It is revenge.
The best hero is Dobby who chooses freedom and with it, goodness.
Monday, July 18, 2011
The Hope-Fulfiller
I am religious inside like many people with my condition. Autism creates a sort of really deep spiritual connection to God. I see it in many people I know who have autism. My knowledge of religion is intuitive in some ways. I see so many people grapple with faith but I don’t need to. I feel the presence of God and it gives me hope.
In my silent years I was dialoging internally all the time with God because he was filling my lonely days with hope. I saw early that God wasn’t a wish-fulfiller because however much I prayed inside to be cured I was never out of my Autismland. I was sad in the feeling that God didn’t care and I was feeling even abandoned. I was five or six then.
I started to be able to communicate at seven, and it is always getting better. I see I am not abandoned. Now my insights are more mature, not magical. I see God as a hope-fulfiller, not a wish-fulfiller. He fills me with hope and listens to my dreams and my prayers. I think that is for me the most important thing. I mean, if I didn’t have a place to put my hopes, I would burst.
We in Autismland are socially isolated, and even if we have loving friends and families, it’s not the same as a typical person due to our lonely illness that makes the outside world overwhelming and isolates people from us. Inside we are imagining our words and behavior and outside we are not able to do it the way we want. Frustrating lives. Sort of alone in company.
Alone is not always bad because I am good at thinking and philosophizing. Here I dialogue with God also, so no matter what I have a companion to sit with me. In a way autism creates a spiritual roadmap, insights, and an awareness of a holy entity that I see many typical, non-autistic people missing. The blindness of neuro-typicals is to miss the spiritual too often, and my blindness is in self control. I guess I have to be grateful for this pipeline that autism has given me to a rich relationship in faith and not just empty rote actions. The isolation is like a monk in a Trappist Monastery, silent but thinking. It’s a sort of quiet relationship to have a walk with God. But I do, and I’m grateful.
Monday, July 11, 2011
Autism, Other People, and Discipline
How do you treat people with autism? In my experience the way people act can vary widely. Some people stare or act like I’m invisible. Others try to be nice. These fall into two groups. First are the ones who act like I am not understanding anything, who look at me like I’m a species of lower-cognition human. They try to help by talking slowly and giving me high-fives. They are well intended. I am not angry at not knowing and being kind. I do get angry if they know I understand and still act this way.
The other folks act pretty normally around me and ignore my weird stims when they come. I am so relaxed around these people. I do take advantage of the opportunities I get with people who are too understanding of me, however. If someone is not intuitive and I feel they are clueless, I can be a real pain, to put it mildly. I mean, all I need is a weak, sympathetic helper and I’m a strangely obnoxious guy. It gets awful because I don’t like being so stimmy and all, but I take advantage of the opportunity time after time. I laugh now thinking of the hapless substitute aide two years ago, who talked to me like I was retarded, watched me stim without helping me get control over myself, and told my mom I had a “good day” at school. When my aide returned the next day the assistant principal stopped her and said, “Never be absent again.” Ha ha ha. It’s funny now, if not then.
This is true in a way for all people. My history teacher was really structured. The students were sitting and working quietly. It was a really nice class. My English teacher was not good at structure or discipline. The same students were rude and disruptive. That class was more of a trial. The students were mostly the same people. My impression now is that a good leader is essential in teaching and in people who work with me. It’s a true thing even with dogs, or anything. We work on making sure our dogs are not the leaders of our home. I know people whose dogs run the entire house.
In autism, we have impulse control problems. My aide must help me control impulses, keep me focused, and help me function in society. I am improving in self control. Glad about that, but I’ll tell the truth, I’m likely to take advantage of wimpy people and I bet your autistic kid will too.
Hope this helps with the selection of an aide.
Saturday, July 9, 2011
Waking a Sleeping Mind Body Connection
I work out and I feel a lot better. In truth, I feel like my body is waking from a slumber. In my doing jumping jacks or knee lifts I teach my body to respond to commands. In the strength exercises I gain muscle power. In the cardio, I get healthy. It used to be horrible. I had soft muscle tone, according to my old OT. In reality, I was out of shape. I was mostly bored in adaptive P.E. I never had exercise, just drills. I needed to teach my body to listen and I needed exercise to do it. I'm tall and big-boned. If I wouldn't have autism I'd try out for football or rugby or something like that. Now I have to be content waking up my sleepy and long slumbering response system, and doing what my body needs to wake up even more. Staying out of shape is not for me at all.
Thursday, July 7, 2011
If Dogs Could Talk
Well, I have seen that lots of people have already watched this film, but I liked the vocals and the dog's urgent, pleading expression. So, in case you missed it, it's here for a laugh. My own dogs communicate so much in their eyes. By the way, so do non-verbal people if you take the time to notice.Imagine how you would communicate in your eyes if that's all you had. Dogs can't talk in our way, and they have no hands, so I guess they need a lot of soul in their eyes.
Take the time to look at non-verbal communication. It's telling you a lot, I can assure you.
Take the time to look at non-verbal communication. It's telling you a lot, I can assure you.
Wednesday, July 6, 2011
Interesting New Autism Study on Autism and the Environment
A recent study links the cause of autism to environmental factors. Now is the time to figure out the cause of autism and how to treat it. If the research helps, I would be thrilled.
More information on the autism and environment research
More information on the autism and environment research
Wednesday, June 29, 2011
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. :-)
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. :-)
Monday, June 27, 2011
Prayers for My Oma
I have a really lovely grandmother. On the outside she is lively, humorous, interested in many things, and she enjoys life and its ups and downs. She had a big family of four children so she is forever thinking about her family, which is a lot bigger now. She is a stubborn woman too. She resists help. She fights against pity. I have seen her recover from a serious injury. At that time she really didn't look the way she should at all. She could barely walk or talk, and she stopped acting like herself.
Then, she stubbornly recovered. In a worst case for her, to be limited is unthinkable. She gets motivated by challenges. I would like to have more of her fighting spirit in me. Sometimes I get too lazy, I think.
Last week my lovely grandmother was diagnosed with cancer. I found out a day after my graduation. In a way I knew it was serious because my mom and dad were visiting her often in the hospital. My uncle is a doctor and he came to town to see her, and my parents kept getting text messages all day. I never imagined cancer, though. We always thought about her heart, not her cells. She just had surgery and is trying to recover from it. I will be hoping and praying for her.
Since I behave so restlessly I don't sit quietly easily in a hospital. It's not a time for me to get restless. She needs quiet. So, my visits are really brief. I try to work on it because I need to. She needs moral support and I need more self control. It's a thing of too much emotion for me. It's hard for autistic people to control since we feel the emotions so strongly.
Wishing my grandmother comfort, strength and healing.
Then, she stubbornly recovered. In a worst case for her, to be limited is unthinkable. She gets motivated by challenges. I would like to have more of her fighting spirit in me. Sometimes I get too lazy, I think.
Last week my lovely grandmother was diagnosed with cancer. I found out a day after my graduation. In a way I knew it was serious because my mom and dad were visiting her often in the hospital. My uncle is a doctor and he came to town to see her, and my parents kept getting text messages all day. I never imagined cancer, though. We always thought about her heart, not her cells. She just had surgery and is trying to recover from it. I will be hoping and praying for her.
Since I behave so restlessly I don't sit quietly easily in a hospital. It's not a time for me to get restless. She needs quiet. So, my visits are really brief. I try to work on it because I need to. She needs moral support and I need more self control. It's a thing of too much emotion for me. It's hard for autistic people to control since we feel the emotions so strongly.
Wishing my grandmother comfort, strength and healing.
Sunday, June 19, 2011
Father's Day in a Wind Tunnel
Then the wind woke up. Roaring through the canyons, howling and screaming it came in all directions, blasting us with cold air, battering the tents, and really making a sleep in peace impossible. Maybe we slept three hours, or maybe four, but we were truly sleep deprived. And still we enjoyed this beautiful area.
My dad was happy to pack us up this morning and have an early departure while the wind still roared. We both fell asleep when we got home.
It is Father's Day and it's a great way to celebrate in a windy tent with my dad and me. This evening we enjoyed a delicious Father's Day dinner at home. Best wishes to all the fathers reading this today.
Sunday, June 12, 2011
The World of Autism
The truth is it must be awful to have autism in some parts of the world. I don't forget my good luck in that if I had to have autism it was in the U.S. I am well aware how my life could have been in a lot of other lands. Since even here people confuse not speaking with retardation, I can only imagine how tough it would be to have no one have time, resources, or social support to help. Then I guess it's a life of stagnation in an institution or worse. Now I see my blog gets world viewers which is pretty cool. I don't know how autistic people are treated in these countries. I do hope that my words help in starting to make a new way to hear what autism is for many of us.
Friday, June 10, 2011
This Summer is Taking Too Long to Get Here
Whew. I need summer vacation SO much. This year has been hard. I sit in regular class from eight to three, except for P.E. Then homework. I blog. I write speeches. It's been a challenge to work on my skills. I have more to accomplish but I am working hard.
I am ready to sit and relax. I count the days til I am free to watch cooking shows, eat a lot of watermelon, swim and ride my bike, see friends and family, and recover and be rejuvenated.
Two more weeks. Will they ever end?
I am ready to sit and relax. I count the days til I am free to watch cooking shows, eat a lot of watermelon, swim and ride my bike, see friends and family, and recover and be rejuvenated.
Two more weeks. Will they ever end?
Monday, June 6, 2011
Cooler Than Usual
The summer is not coming where I live. Today it rained. We were in long sleeves. This is odd because many times in May it is already like summer. I remember this because my birthday is in May and many times we are already swimming or at the beach. One year it was a huge heatwave. Now you couldn't pay me to go in the ocean without a wetsuit.
I'm not complaining. Though I love swimming, I hate heat. This sort of prolonged spring is fine and great. The weather is unpredictable in its ways. I am enjoying the cooler end to spring.
I'm not complaining. Though I love swimming, I hate heat. This sort of prolonged spring is fine and great. The weather is unpredictable in its ways. I am enjoying the cooler end to spring.
Sunday, June 5, 2011
An Opportunity to Be Heard
I'm back from presenting at the Moses-Aaron Cooperative today with my fellow non-verbal autistic friends. We wrote speeches that are read by someone else. It is a really elating experience. We all were silent and stuck internally for the early part of our lives. Now we are not. It is a terrific thing to be a part of. Thanks to fearless Jackie Redner, the instigator of this important enterprise. This is our third time meeting and hopefully many more will follow.
Thursday, June 2, 2011
Piano Lessons
I take piano lessons. When I started I was sure I could never do a thing with my clumsy hands. My hands don't listen to me well. I fumble with buttons and shoelaces so I thought, "Right, I'll play melodies. Ha ha."
Cool in a way to remember that because I do play melodies now. Some are in two hands. My progress is slow but my skills improve steadily. Sometimes I get discouraged because I can't control my hands better than I do, but I can control them better than I did. My teacher is patient and kind and I am so lucky to have her.
Cool in a way to remember that because I do play melodies now. Some are in two hands. My progress is slow but my skills improve steadily. Sometimes I get discouraged because I can't control my hands better than I do, but I can control them better than I did. My teacher is patient and kind and I am so lucky to have her.
Sunday, May 29, 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.
Ido
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