Sixteen Candles

Today is James’ 16th birthday! We officially celebrated last week so some pictures from the party are here.  We are so grateful for this last year and all the changes it has brought.  James asked me to put his birthday thoughts on the blog so here they are: “I can’t believe I am 16! Have I really changed this much in a year? I keep remembering my old life and wonder how I made it here. Birthdays are a good time keeper.  Last year I was jealous of Meredith but had no word for it. I felt anxiety but mistook it for hunger, and I thought I was a genius but I was wrong. I have learned so much this past year, about the world and myself, but I have so much more to grow. I want to thank everyone who has supported me on my journey”.
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Thoughts for the local support group

We have a great group of local families working on full communication for their kids using RPM and other forms of  typing like Facilitated Communication.  We meet in various settings and this week some parents met at our house and we asked James and his friend Huan to share thoughts with the group as well as answer questions in a panel format.  Huan is 18 and is a close friend of James. His public school setting is very difficult, so people in our community are working on getting some much needed change in the district. James feels strongly with Huan that a full, mainstream education is a right that is being denied many people with autism so they spent some time discussing this with the group.  James opened the meeting with the following statement and some of his other comments are below as well.

My Journey to Myself.
I began my journey 2 years ago with Soma. Then Elizabeth. Then Shannon. Occasionally, I remember that fall of 2013. I remember how hard it was, the grunting, and the hope. That Christmas I wrote letters to each member of my family, my first true words to my siblings, but it took days. Now I attend a homeschool group with my best sidekick, writing literary analyses. I also fit in clothes, go to Awana, have real friends, and I typed this whole thing in under 30 minutes on a Friday afternoon. These pale in comparison to becoming who I am independent of autism. Shannon listens and guides me on my journey because I am more than autism, I am James.
Parent Question: What is the best way to deal with people or therapists who talk to you like you are a baby?
James: They will learn when I tell them my thoughts.  If they don’t listen, they will never get it. It’s not worth my energy.
General discussion of school settings where students with low verbal autism are not respected:
James: I don’t want to go to (public) school but others do so it is important we help. Huan is the warrior, we need to help him.
Parent Question: How and when did you learn to spell?
James: I taught myself out of boredom. I was always trying to prove to myself I was there.
Parent Question:  What do you think of the current definition of autism that states it is primarily a disorder marked by social deficit? Do you think that might change?
James: My body betrays my thoughts. People react to what they see, but it is a motor disorder not social (disorder).
Parent Question: Explain the role of the person who holds the letter board for you.  How is different than typing on a keyboard independently.
James:  I need the independence but love and need the person.

Snap Decisions

One of the challenges James has faced in his homeschool class is participating in “timed essays”.  James can usually come  up with a thesis statement and ideas to back it up but to spell it out letter by letter is hard to do in the amount of time allotted.  His teacher has been great about letting him start with the class so he can get a sense of doing it like everyone else but then finishing it later at home.  The prompt for this essay was, Are snap judgments better than decisions to which people give a lot of thought? Plan and write an essay in which you develop your point of view on this issue. Support your position with reasoning and examples taken from your reading, studies, experience, or observations.

Here is his essay.  Thesis:  Snap decisions do have negative consequences, making them inferior to rational decisions.

“There is a black man near the school and he has a gun.” A concerned citizen calls to alert the police. The police lock down the public schools. The manhunt begins for this armed black man. After a struggle, an officer tightens cuffs around this criminal.

The police worked given the information a scared citizen provided. In most situations, police must make snap decisions based on limited information. These situations allow room for error, a calculated risk preferred over other outcomes. For example, imagine a man evading police and a witness reporting he might be armed. The safe decision, to arrest and disarm the man, requires little thought and exemplifies the value of snap decisions. Unfortunately, snap decisions do have negative consequences, making them inferior to rational decisions.

In Stafford, Virginia in June 2010, a teenage boy with autism sat outside a library waiting for it to open. The next few hours changed his life forever. The female called the police based on her assumptions and began a series of snap decisions devoid of reason that devastated a family. In order to change the outcome, the woman should have thought about other possibilities beyond her initial judgment.

Experience influences snap judgments in the form of stereotypes. Stereotypes are useful and necessary tools, but they will persist until challenged by new information. Without rational thought, stereotypes perpetuate their own existence. A self-fulfilling prophecy ensues and the original stereotype strengthens. The woman allowed her stereotypes to influence the police, leading to hundreds of students and their parents fearing for their lives and a teenager afraid of what chased him. The autistic boy ran without knowledge of why the police were chasing him, he refused their search of his body, and he fought the handcuffs because the police neglected to tell him why or even ask him a question. The officer made snap decisions, understandably, but he also failed a citizen he swore to protect.

The benefits of snap decisions pale in comparison to rational thought when time is available. The time for the female caller to research the situation or to provide more information to the police could have saved everyone their hardships. A snap judgment should only be used when the time is restricted or when one decision will allow for a more rational decision. In this situation an innocent teen would have solace in the library instead of frustration in a cell.

If money were no object…

James and Elizabeth listened to a talk given by philosopher Alan Watts entitled “What Do You Desire?” In it he says that he often asks his students “what would you do with your life if money were no object?” Elizabeth asked James to answer that question and here is his response.  (A lot going on in that 15 year old head of his!)

IF MONEY WERE NO OBJECT, I WOULD JUST LIKE TO LEARN AS MUCH AS I COULD. THERE ARE SO MANY THINGS I WOULD LIKE TO KNOW ABOUT. MY MIND IS ALWAYS ASKING QUESTIONS. HERE ARE SOME THINGS I WANT TO KNOW.  WHY IS THE WORLD IN SUCH A STATE OF CONFLICT? ARE HUMANS CAPABLE OF UNCONDITIONAL LOVE? BARRING A MIRACLE, WILL AUTISM EVER BE ACCEPTED AS A VARIATION IN THINKING INSTEAD OF A DISABILITY? HOW DOES ONE KILL ANOTHER PERSON?  I DON’T UNDERSTAND HOW THAT EVEN WORKS! HOW CAN UNDERSTANDING DIFFERENT PRACTICES OF RELIGIONS LEAD TO GREATER TOLERANCE AND PATIENCE. CAN LIVING WITH LESS LEAD TO GREATER ECONOMIC RELIEF?
REALLY THERE IS NO END TO MY QUESTIONS. I WANT TO KNOW SO MANY THINGS. CAN YOU TEACH   ME MORE? I FEEL LIKE MY THIRST FOR KNOWLEDGE IS ENDLESS.

Pilgrim’s Progress

photo (21)James’ British Literature class read the classic book Pilgrim’s Progress by John Bunyan. He had to write an essay in response to the book using something from his life. It is below:

Autism in a Speaking World

The allegory, The Pilgrim’s Progress, uses characters and places to tell two stories. The obvious story readers can find spelled out on the page, but the real story lives in the heart of each reader. Beelzebub, as the mayor of the merchant city, demonstrates the fear of change and how people can prioritize money over morality. He becomes hostile to Pilgrim and Faithful when they disrupt the town’s normal way of life. The calm demeanor and godly words of the pilgrims cause a catastrophe. Beelzebub condemns the pilgrims because their differences cause unrest and disorder.

Beelzebub forced me to live my worst memories. I recognize his fear and cruel reaction from people whom I have encountered. Yes, all people want their society to be clearly defined. I, however, challenge the idea of normal by looking different, and I bewilder their beliefs with my ability to think. My parents take me to public places and people act as if I am a child, playing peek-a-boo, or they act afraid, keeping away from me. In either situation I am the focus of attention because I am different.

As punishment for the pilgrims’ odd behavior, Beelzebub condemns them to a cage in the center of town. The cage in this story symbolizes how a community can punish thoughts that differ from the main beliefs and put them on display as an example. Some citizens of the Merchant City spoke out against the punishment and then Beelzebub scared them into submission. A literary example of public shame exists in The Scarlet Letter, with Hester Prynne. She remains scorned for adultery similar to the social ramifications for being termed a zealot.

Society still uses a version of cages for people who differ from the norm. My cage was special education, because autism makes me different. I do not often speak of my religion, as the pilgrims did, but I used to scream about my intelligence. The more fervently I screamed, the smaller my cage became and then the more I screamed. I was not a typical student and teachers thought I could not be intelligent. Some who tried to save people like me have been silenced from fear, just as the townspeople were silenced, but others succeeded. I broke out of my cage and now try to liberate others. In addition, I finally found a community that refuses cages and invites differences.

Wasteland

I have to apologize to our blog followers for the month long lag in posts!  James continues to improve with his letter board spelling and he is working hard at getting faster and more fluent on the keyboard.  We use a wireless keyboard that shows what he is typing on an ipad screen.  His goal is to use the keyboard full time because it doesn’t require someone to write down what he is spelling and people who are talking with him can just read the screen rather than follow his letter pointing. Today he hung out with a friend from his homeschool group and they talked for an hour with the keyboard and ipad for James’ side of the discussion!
On the school side of things James and his teachers work hard on lots of different subjects but I thought I would share this lesson on the documentary Wasteland.  (James is in caps)
WE ARE TALKING ABOUT A DOCUMENTARY CALLED WASTELAND. A DOCUMENTARY IS A FILM THAT TELLS A STORY ABOUT AN ISSUE WITH REAL PEOPLE NOT ACTORS. THIS DOCUMENTARY TELLS THE STORY OF VIK MUNIZ AN ARTIST WHO WENT TO HIS HOMELAND OF BRAZIL AND MADE ART FROM TRASH.
MUNIZ WORKS WITH CATADORES WHO ARE GARBAGE PICKERS. THEY ARE STIGMATIZED AS POOR AND LESS THAN. Can you relate? I THINK ALL AUTISTICS CAN RELATE TO BEING STIGMATIZED. WE ARE CONSIDERED LESS THAN IF WE CAN’T SPEAK.
THE CATADORES SIFT THROUGH THE TRASH TO PICK OUT TRASH TO RECYCLE FOR MONEY. THIS IS HOW THEY MAKE THEIR LIVING. THE CATADORES MAY BE LOOKED DOWN ON BUT THEY ARE MAKING AN HONEST LIVING FOR THEIR FAMILIES.
THE CATATORES FIND MUCH THAT OTHERS CONSIDER TRASH AND PUT IT TO GOOD USE. THEY HAVE CREATED A LIBRARY OF BOOKS THEY  HAVE FOUND IN THE TRASHL. THEY HAVE FORMED A CO-OP OF PICKERS TO SELL THE RECYCLABLES AND SPLIT THE MONEY. TIAO, WHO FORMED THE CO-OP, WAS CRITICIZED AND DOUBTED BUT HE PERSEVERED. THIS IS WHA AUTISTICS MUST DO, PERSEVERE THROUGH THE DOUBTS OF OUR INTELLIGENCE.
MUNIZ ARTFULLY CREATED PORTRAITS FROM TRASH AND RECYCLABLES TO CAPTURE THE BEUATY AND GRACE OF THE CATADORES. I AM BLOWN AWAY BY THE BEAUTY OF MUNIZ’S ART MADE FROM GARBAGE. IT REALLY ILLUSTRATES THAT BEAUTY IS EVERYWHERE. MUNIZ GAVE THE PROFITS FROM HIS ART TO THE CATADORES WHO ARE USING THE MONEY TO IMPROVE THEIR LIVES.

THIS WAS AN INCREDIBLE LESSON. IT MAKES ME THINK ABOUT SO MANY THINGS. MY LIFE BY COMPARISON IS SO LUXURIOUS. I CAN RELATE TO THE FEELINGS OF STIGMA BUT THIS STORY INSPIRES ME TO PERSEVERE.

Inspiration

James had a chance to discuss some interesting quotes by famous people this weekend with Soma and with Elizabeth last week.  Elizabeth focused on the inspirational words of Martin Luther King. Here are some of James’ thoughts in response to the quotes she shared with him.

“Life’s most persistent and urgent question is what are you doing for others?”
J: Just taking from life is no life. 
“We must accept finite disappointment, but never lose infinite hope.”
J:  Life is full of disappointments however, hope always unusually triumphs over disappointments.
“I have decided to stick with love. Hate is too great a burden to bear.”
J: Hate is an emotion that gets you nowhere. On the other hand, Love can overcome most obstacles. Given the choice, always choose love. 
“The function of education is to teach one to think intensively and to think critically. Intelligence plus character – that is the goal of true education.”
J: This goal was never part of my education until I was homeschooled. The main goal of my previous education was childcare. This was pure torture. Now those days are far behind me. I have no doubt that my education now is building both my character and my knowledge. 
“The time is always right to do what is right. “
J: There is never a wrong time to to be the best person you can be. You are your auspicious and final monitor of of what is right and wrong.
“I have a dream that my four little children will one day live in a nation where they will not be judged by the color of their skin, but by the content of their character. “
J: No one should be judged by the color of their skin, their religion, their sexuality, or by their ability to speak. In fact, men should never judge other men. That is a job for God alone.
“Love is the only force capable of transforming an enemy into a friend. “
J: Instead of hate we should all try a little more love.  

 

 

A Report on Human Flaws

James’ first oral book report was due this week. The assignment was to be done over the Christmas break and it was a book of his choosing.  James chose Animal Farm by George Orwell which he listened to on tape this summer.  He had to listen to a lot of it again in order to write his report but it was worth it.  His teacher Shannon gave the oral report on his behalf.  Since it was to be presented to the class the main teacher said it needed to be interesting!  It was a big success so I thought I would share it.

Human Flaws Transcend Time

I had a dream! We were free to rule ourselves. Can you imagine a life without oppression? Then a battle for that exact freedom ensues and when the dust settles the oppressed stand as the victors. Free. Eventually a leader must arise and here sits Napoleon.

This sounds similar to many revolutions in history, yet it belongs to a novel, Animal Farm written by George Orwell. Even more intriguing, the victors are animals that just took control of their farm. The pigs quickly rise as the educated class, while the other animals find their place in the new society. Two pigs strive for leadership, Snowball and Napoleon. Snowball aims to be a great leader, yet Napoleon uses force to run him from the farm and assume full control.

The philosophy of animalism, all animals are equal, that started in the beginning began to crumble. The animals continue to follow Napoleon despite his obvious changes to the original agreements by all the animals. The pig named Squealer served as a propagandist to help sway the opinions of the common animals when they disagreed with Napoleon’s actions. His main statement being that Napoleon was acting on behalf of the whole farm and it was better than the old farm. Another key animal, the cart-horse named Boxer, helped the farm progress. He exemplifies dedication and loyalty throughout the novel.

Many themes run through this novel, but two dominate. The main theme, corruption, creates the backbone to the story. Napoleon trades the socialist ideals for the dictatorship he desires. When a reform group usurps a leader a new leader must arise, but often the new leader simply takes over the old reins. This occurs on the farm and the animals allow it because it is an improvement at first. The second theme, social stratification, displays itself from the revolution. This is the only fault shown in Snowball, the belief that pigs are smarter and leaders. People tend to group themselves and this is apparent on the farm.

George Orwell created this novel as a commentary on the politics of the Soviet Union, but it still applies today. More leaders, more countries, more decades. He describes basic human nature through animals on a farm. I highly recommend this book to all high school students. Whether history interests the reader, everyone can enjoy this novel.

 

Pandora’s Box

James had a fun and creative lesson with Elizabeth today.  He spends so much of his RPM time doing school assignments or expressing himself for matters of daily life that it is easy to forget how wonderful (and important) creative exercises like this one are for him. In this lesson he listened to paragraphs of the story and then summarized what he heard after each one. Then he was asked to write his own modern version of Pandora’s Box.

Here is some of his summary and his own version of the story.

The gods sent Epimetheu another gift. It was a box they said not to open. One day Pandora’s curiosity got the best of her and she peeked in the box. When Pandora lifted the lid she released the Troubles. The Troubles flew out and stung her and Epimetheus. The Troubles brought illness, poverty and scarcity into the world. Hope was left in the box and convinced Pandora to release it. Hope flew around the world restoring the work the Troubles had made.

Basically I am living the actual story of Pandora’s box. My life has been filled with troubles. I have not been able to speak. I was trapped in an uncooperative body. No one thought that I was smart or capable of learning. I felt hopeless. I found hope or rather hope found me in the form of RPM. Now I have been released from silence!   The end!

 

 

 

Christmas Appearance

A few years ago I wrote an essay for the Age of Autism about the holidays and the mixed feelings they bring. One point I made was that our family could no longer look like all the families in the beautiful Christmas cards I was receiving  because autism had changed everything. Not only were we sad and overwhelmed by daily life with autism, but the disorder had made it impossible for James to even pose for a picture so we couldn’t fake it even if we tried! But I also mentioned that our family had grown in ways that only struggles can induce and I was grateful for the saviour who came for the broken and for the hope found in the words of another struggling friend who said “somehow we hope the mystery of Love is birthed each day in being broken and being poured out.”

Four Christmas’s later we have a whole new “autism” to consider.  We have a son who is communicating in ways we never dreamed. He is cognitively and intellectually intact and has a life that we never imagined. But he still has many challenges and struggles. As much as I want him to “appear” normal and to live with ease it is still difficult. We had a family Christmas party this weekend and it was wonderful to see everyone but James didn’t do well.  He reverted back to some habits that he had when he could not communicate. These habits are slowly disappearing but they are hard and why do they seem worse when we are around extended family?  When we got back home he told me that he got overwhelmed at the party because “they all doubt me and see me as the autistic boy I was. I am not that boy anymore but I fall right back when I am with people who knew me then.”  I disagree with him about them seeing him that way but I understand that is how he feels.  I asked him to write about this experience for the blog and he kindly did!

I recently wrote an explanation for my poor behavior at a family event. Basically I became overwhelmed by everyone’s expectations that I ended up fitting them. My teacher tells me that this is normal, but autism makes it worse. People tend to judge based on looks. I look like I am stupid. Yet here I write this message. I cannot say my thoughts, I repeat dumb phrases, I cannot move right, and I am like a baby when I am upset, but I am smart and thoughtful. I wish people could ignore my appearance and know my soul, but that is human nature. It takes a special person to look beyond my autism.

My family was given this opportunity with RPM and they changed their view of me, but people I interact with infrequently have not had this opportunity. Therefore they expect autistic James instead of the teen I have become. I gave them a boy I no longer recognize and do not want to be. My message? Expect the best of others and see past how they look. Your attitude can make a difference.