Monthly Archives: April 2011

Autism and Anxiety

So very nervous inside all the time. That’s what Temple Grandin says. That’s the way it is for the majority of autistic people. Really, I overflow hoping I can control the stress I feel. The stress is so vicious inside. Even with communication and better skills I still suffer from it.
You see it in so many autistic people. They bolt or dash out. They stim because it soothes them. I see kids who bite and hit themselves, who scream- not to get anything- but to have an outlet, who have meltdowns. These are the reasons why- severe nervousness, stress, internal overflow.
You can imagine how rough this is for people who can’t communicate their ideas and feelings. They get told, “hands down” or “no”, or people think they are not really aware of their emotions. Well, it is a bit different. It is sort of like a car rolling down a hill. It gains acceleration as it rolls. Think of that in an emotional sense.
What can you do to help? Quick removal from the stressful situation. If you need to come back, OK. The interruption is helpful in breaking the momentum. Also, it helps to get some caring. I remember seeing this happen. A non-verbal boy I know was starting to get restless and really angry in a piano lesson. His behaviorist was saying all the ABA things, “Hands quiet”, “All done”, and so on. It was getting worse. My mom was watching and she said to the boy, “I know it is so frustrating when your body doesn’t do what you want it to.”
You know what happened? He relaxed. That’s what happened. Then he leaned on my mom to communicate his gratitude because he had no other way to express himself. This was important for me. Sort of a reminder that being treated with respect and kind empathy helps reduce anxiety, even in a kid everyone labels as “low-functioning”.
That’s all for now.
See you soon.

My Poetry Recital

So let me tell you how my poetry recital went. Some of you may recall reading that I had to recite a poem out loud in my English class to be graded on flair, poise, memory, etc. It’s a joke in that I have mostly unintelligible speech. I have the flair of a tree stump. No attitude of drama. I can tell you it was silly.
My mom suggested I use my dynawrite in class to recite the poem. Then after class, one on one, I could spell it for the teacher on my letter board to show I memorized it. I thought that was a logical and fair accommodation.

My teacher said no. I needed to go in front of the class and spell the whole damn thing. So I tried. Stupid of me. I should have sat it out, to just get a “fail” for my speech impairment. I spelled several lines. I like the poem by Robert Frost. Here it is.
Stopping By Woods on a Snowy Evening
Whose woods these are I think I know.
His house is in the village though;
He will not see me stopping here
To watch his woods fill up with snow.

My little horse must think it queer
To stop without a farmhouse near
Between the woods and frozen lake
The darkest evening of the year.

He gives his harness bells a shake
To ask if there is some mistake.
The only other sound’s the sweep
Of easy wind and downy flake.

The woods are lovely, dark and deep.
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.

I got to line three and couldn’t take the stress of the class staring at me. I felt so weird, so stuck, so disrespected by this teacher. It was overflow. I did what I hate time after time in overflow, which is really rare, but it happens. I can’t control myself. I’m ashamed to say that I pulled my aide’s hair in front of the entire class of about forty or so kids.

I feel wretched and remorseful. On the other hand, if my teacher had been sensitive to my disability, none of this would have happened. I learned an important lesson to say no if I can’t do something- so maybe something happened in spite of my miserable performance that will help me in life.

To My New Readers

Since my speech was on the Autism Speaks webpage I have been receiving so many kind words. It is amazing to hear them. My dream is to release non-verbal people from a life of solitude and being misunderstood. I will write about this when my schedule allows. During the week I have homework after school so please be patient with me.
I am glad you are reading my ideas. I hope you will share them with autistic people too. I would have been helped to know escape was possible when I was younger.
Best wishes,

To Louise and Alec

Now I am sad because a wonderful lady I know died. She was not a young person in years, but she was in heart. She greeted me so warmly. I think she had no concerns that I was different. No concerns that I was autistic or non-verbal. Not like many who focus on my impairments, she saw me and was open to being friends as I was.

I know Louise, her daughter, and Alec, her husband of sixty years, and her son, and grandchildren, and even Louise’s dogs, will miss her. Still, we are all blessed for knowing her while she was here. I think she is one of the angels that come to earth to tell us to live, love, and laugh. Now we need to live, love, and laugh as she would have wanted us to.

Shouting from the Mountain Tops at Walk Now

If you are going to be in the Southern California area this Saturday, I will be giving a speech at  Walk Now for Autism Speaks around ten in the morning. I will go up with the Miracle Project Fly singers and they will sing and I will share my ideas.
I am so honored to be included. It is a huge event. So many autism professionals, families, and people. I want the point of view of non-verbal people heard loudly. From the mountain tops and over the oceans I want people to know that not speaking is not the same as not thinking; that poor fine motor is not the same as not thinking; that impulsive actions are different than not understanding right from wrong; that poor facial affect is not the same as having no feelings; that boring people to death is denying them life, liberty, and the pursuit of happiness.
In my silent years I thought about what I would say to an audience like this if I had the chance. I dreamed of Moses in my mind saying, “Let my people go!” You all know I am a thinker on Moses as I have shown in several essays. It was a thought I had in my internal prison imagining I could be freed by someone. I dreamed of talking, of course.
But I am not free because I talk. I don’t talk. I am free because I can express my ideas in pointing to letters, in typing, in my blog and in my speeches. 
I am not lonely now.

My Moses Speech

Moses couldn’t talk well yet he was the man God selected to liberate the Hebrew slaves. Why did God choose an imperfect man to do the job? Moses pleaded with God to choose someone else. He said, “I don’t talk well. How can I speak to Pharaoh? How do I make my point heard?” God insisted it be Moses in spite of his speech disability. “Moses,” he told him, “You must use your brother Aaron as your spokesman.”
Why did God do this? I think for several reasons. First of all, Moses was a great man, perfect in spirit and values. He fought for justice. He yearned for fairness, and he was a free soul inside. He was a slave’s son and a prince. He knew freedom and he was not limited by fear of the whip.
I think God also wanted to show that perfect in His eyes is not the same as perfect in man’s. That is, God looks to the core, not the shell. Moses was not sure he could do it because he saw the shell. The core was revealed gradually as he led the slaves to freedom.
Moses amazed the world in his challenges. Who was he, this speech impaired shepherd, to challenge Pharaoh, thought to be an embodiment of the gods at that time? Moses assumed he was right when he insisted on freedom because God insisted it was right. Pharaoh assumed he was right when he insisted on slavery because no one dared challenge Pharaoh. That is, until Moses, the reluctant spokesman stuttered, and Aaron repeated the command to let the slaves be freed.
Moses taught the world that God rejects slavery. No matter how this idea has been ignored, no one can argue after the Exodus, that God approves of enslaving others. This was the first time that humanity saw a mass liberation movement and it has inspired people for thousands of years to aspire to be free.
There is also a lesson in mutual support. Moses had a helper, and this, I think, shows that we should not take too much on alone. Aaron and Moses are a team. I am sure Aaron needed Moses as much as Moses needed Aaron, and God relied on both of them to convey his instructions of liberation.
The message of Moses is that one leader doing what is right, with the right support, can change a terrible situation to one of hope and promise. I get inspiration from Moses. I faced a terrible situation without hope in my childhood. But, despite my inability to speak, I have reluctantly seen that if I don’t say the truth it may be years before change occurs. So, I face my pharaohs- autism experts- to see if we can’t find a way to liberate autistic people from the solitude they face.

The Speech I Made to the Parents Yesterday

I’m happy to speak to you today.
I am here to represent the point of view of people with autism who don’t speak. Some of you might be parents of non-verbal people like me and stopped believing it was possible that your child could ever learn communication or even to understand.
I don’t doubt that experts probably told you that it was false hope to imagine that your child could talk. Well, I don’t talk but I still go to regular middle school in regular classes and do regular homework and schoolwork, and I get good grades of A’s and B’s. I tell you this, not to brag, but to give you hope.
I don’t need to talk with my mouth. It’s too hard. But I’m able to communicate thanks to my letter board and dynawrite. It was a long journey to get to here from where I started. I had years of silence and rotten frustration. I was totally not able to show people I understood, so I suffered inside while my specialists chose wrong for me.
It was the worst, and I know it’s kind of equally challenging for parents too.
But here’s my hope. I went from so bored in school in remedial education when I couldn’t communicate to a diploma path in high school next year. How, is the story of the potential in your kids.
Teach them interesting things. Read them age appropriate books. Talk normally to them. Not, “go car”, “say hi”, “good job”. I believe many autistic people are understanding inside and can’t show it. To be talked to like a baby is so frustrating.
The letter board was my freedom. This is it.
It takes a while to learn how to use it, but it’s worth it.
Communication is the most important thing.
Autism is a deep pit. Don’t give up.

Passover 2011

It is Passover and the start of spring. The flowers are blooming in colorful ribbons and streams of life.  My yard has birds all over the shrubs. In spring, life bursts forward.
How appropriate that Passover be in the spring. On Passover, slaves burst into liberation. Life blossomed from a weary people. In a way, like the weary earth after winter. The reality is that the liberated slaves were really not ready to burst forth into freedom. They had been too limited by oppression to see the possibilities that awaited them. They were scared of the world beyond their walls. How amazing to go from a life of hardship and cruel treatment to the world of choice and hope. I mean, freedom, manna, miracles, Moses, the Ten Commandments, the Torah. It’s a burst of spring in a celestial sense, because like spring, life blossomed from this burst.

Ode to TV Chefs

The chefs have recipes
To please every palate.
They stir and chop and bake
On television shows.
They make stew and roasts and cake
With really savory aromas.
The aromas I can imagine
In my armchair in my home.
The chefs are French, Italian, Chinese.
They teach me the love of food.
I enjoy an imaginary meal
In my most tasty mood.

Speaking in Public

I spoke to a group of middle school and high school students today. When I get nervous I get so restless. I pace and I devour all the snacks. Wish I could modulate my emotions better when I stand before an audience. Now I get so nervous. Especially today. I was being interviewed by the audience and I was being filmed. Now it’s like a time trial. I have to do better each time.

On a sort of silly note, I’m required  to recite a poem in my English class. It’s a state requirement apparently. I guess paralyzed students are also required to sprint in p.e. or the deaf kids must sing in choir.

I need to stand in front of the class in poised, dramatic style. Ha ha ha ha. My speech is monotone and garbled. I am pacing and nervous. It’s my worst abilities. Not my strengths. Well, we’ll see how it pans out. Ha ha.