Category Archives: motivation

Behind the Silence


This story is touching and important. It shows commitment, determination and love and how once again parents need to trust their observations over expert advice. Here was a boy, trapped in his body in a different way than I am, but like me he was not able to talk, gesture or write independently. Therefore doctors incorrectly advise his parents that he is a “vegetable.” My mission is to give non-verbal people the benefit of the doubt. In many cases people have emerged from non-responsive bodies to show intelligence. Why then do so many professionals persist in seeing people with non-responsive bodies as not? The lesson from this film is not just the inspirational one. It should be a caution to professionals against assuming the lowest for their patients based on external observation. Time after time people with cerebral palsy, autism, strokes, comas, and even encephalitis have been able to emerge to show that some of them were thinking while unable to show it.  It boggles my mind that people resist this possibility in so many instances. The amazing thing is that this has been going on for decades. Each individual emergence is a story and no one generalizes it.

Accepting Autism

In some ways I’m getting used to autism but I can’t get too used to it or I won’t get better. I have to strike a balance between the need to accept myself the way I am and the need to not accept myself the way I am, so I can keep fighting to improve. Not easy to find that middle spot.

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.

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.

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.

Adjusting to High School

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

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

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

No Limits

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

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

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

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

Envy Sucks

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

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

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

Envy Sucks

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

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

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

Disabled, or Super Able?

I have been thinking about people with disabilities who succeed at high levels. For example, many of you have seen the films of Oscar Pistorius, the runner, on my facebook page. He has no legs and he is a runner of world class speed. This is what we call a paradox.
In music, we find the same situation with Evelyn Glennie. She is a great musician and she feels her music because she is deaf. Look at what Beethoven accomplished in his deaf years.
In the sciences, we have Stephen Hawking. In engineering, Temple Grandin. In athletics, Jim Abbott (another paradox- a handless pitcher), and  one-legged wrestling champ, Anthony Robles.
In other words, we have the human spirit unwilling to quit. Kind of staggering in a way because they had to fight very hard to be average. But they were not average. They were superior.
Adversity can make you determined. I know this from experience. Heaven knows, I’m a paradox too. I can’t speak and I give speeches often. Someone else reads it out loud, and I’m standing near, but I’m not quitting. In the weeks ahead I am gathering videos of the inspirational and determined, who are shattering limits, for you to see. They are my hope and my models.