Utter Remorse

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I  mentioned in our last post that we had been on a bit of a roller coaster ride with the start of the new school year. One of the difficult experiences was an incident with James and a well loved tutor. The incident involved James being aggressive towards her which is unusual for him. A friend and health practitioner reminded me at the time that the stress and aggression pathways in the brain are closely tied.  It is true for all of us (ie, road rage) but acutely true for people who have autism. I think the stress and frustration of not being able to communicate for years and  years causes aggressive habits to develop and they are hard to break.

James ended up writing about it on the first day back at Literature class when there was a timed essay. The prompt was: “The lessons we take from failure can be fundamental to later success. Recount an incident or time when you experienced failure. How did it effect you, and what did you learn from the experience?” James wrote about his experience with his tutor and entitled it:

Utter Remorse

My vision turns red. My hands strike out. Hair tangles around my fingers. Cries and demands float through my brain, yet I cannot release my grip. Hands grasp my arms and a male voice cuts through my fog. I look – I see – what I have done. I have failed.

            Most people lack similar experiences so this event might seem like a fictional plot device, but I have a long history of such incidents, although none to this degree. I am autistic so I struggle when most people could cope, and unfortunately my reaction can be aggressive. I am not aggressive. I never intend to hurt anyone, and that distinction usually saves my conscience. Generally, my tutors and therapists impose consequences for my behavior, but then we forgive each other and discuss the cause of my reaction. Autism and communication limitations tend to receive most of the blame so we make a plan and we try again tomorrow.

But this outburst was different.

After I finally learned how to reliably communicate, my goals transferred to regulating my reactions and impulses. For over two years, I worked daily to master these goals and I remained aggression-free for almost one year. That does not mean that all of my interactions with tutors were amicable, but I continuously reminded myself that my impulse to grab remains unacceptable in any situation. All that progress, however, just capsized. I failed the basic rule when I hurt another person – I failed to recognize her humanity.

            Although all seemed broken and unrepairable, I learned a valuable lesson from this incident. I felt the most remorse I have ever endured. My victimized tutor held me, not my autism, accountable and she refused to continue as my tutor. For the first time, my behavior caused me to lose a relationship. My parents oscillated between yelling at me and ignoring me, but they definitely expressed their disappointment in me – not my autism. For once, I was treated as a typical teen, and I needed that reality. All of my privileges were revoked: no outings, no computer, and no social visits. As an electronic addicted extrovert, these punishments were severe, but my mother’s words inflicted the worst punishment: this incident branded me as aggressive.

            My real lesson surfaced when I realized what an aggressive label meant. Since I am seventeen, public aggression can result in prison or an institution because I am a danger to society. I rarely have any incidents in public, so this concern seemed unrealistic, but my parents emphasized that most groups exclude aggressive applicants. This daunting possibility impacts my career, housing, social groups, and any classes I want to enroll in.

This warning, however, failed to compare to the immediate implications of an aggressive label. We must now inform future tutors of my rare, but possible aggression. Every applicant will begin their training biased and apprehensive about my behavior. Their first impression will now be tainted by my past, and I will need to overcome this negative perception.

The people who choose to teach me have their own lives, their own emotions, and their own flaws. I cannot impinge on their human rights by allowing my frustrations and impulses to cause them harm. I failed, but I learned the true impact of that failure. Society will no longer tolerate or excuse my aggressive behaviors and incidents like this massive failure will have significant consequences because I am no longer a child. I – not my autism – am responsible for my actions and their consequences will shape my future. To me, this realization, marks success. I might stumble, but never again will I blame my autism or feel validated for my reactions.

 

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Roller Coaster Start

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I (Brooke) am writing today’s blog post with a special guest post by our friend Alan in Long Island. We’ve had some big ups and downs since we last posted. James successfully took two three hour placement tests at Northern Virginia Community College. He had to take these  in order to be a “dual enrolled” homeschooler there this fall. The benefit of taking a class at NOVA this year is that it gives him an opportunity to be around other students, continue to build tolerance for a classroom setting and begin “wading” into post secondary education waters as he hopes to attend a four year university someday.

It seemed like a simple goal back in the spring to take an introduction to Psychology class! Well, we’re learning. The first difficulty reared up 4 days before class was to start. James was so nervous about keeping it together in an unknown classroom that his behaviors tanked and we had to scramble his teaching team and all the schedules we had planned for the fall. There was great relief after the first class or two when he realized it wasn’t so scary, the teacher was nice, the other students accepting and he could handle the work.

But a short time later he went back to his demanding Literature and Composition class and we began to see the stress of having to keep his body and emotions under control three days a week in a classroom. Throw in a first college exam and a bad’s night sleep and you have a recipe for disaster, or at least the feeling like you are riding a roller coaster. Because when you get a 96 on your first exam and you do keep it together in class that feels really good too.

In the midst of this James received a wonderful letter from his friend Alan in Long Island. Alan is a friend and client of James’ sister Jane and like so many people with autism he has a very deep and intuitive sense about people and events going on all around him. He didn’t have any first hand information about James but God must have placed him on Alan’s heart because this is what he wrote:

Dear James, 
I’m thinking of you because I heard you were struggling to adjust to new circumstances. For us autistics thats life’s biggest challenge. Just know you’re not failing. You’re doing the best you can. Failure is not caring. Sometimes I forgot how to care. A long life of struggling meant a growing apathy in my soul and if I wasn’t careful I would soon grow sadly hard. I don’t think you’re in danger of the same fate. However, I do think you’re in danger of hurting yourself with unrealistic expectations about how much you can handle. Again and again I tried to impose standards on myself I couldn’t meet. All the while God was telling me I was good enough. He didn’t impose those standards. Why should I? So please go easy on yourself. I will check back in soon.
Love, Alan. 
Such profound and important thoughts. We are grateful for Alan and everyone in James’ life who is helping him find the balance between reaching for his goals and taking care of himself. A life long challenge.

Anxiety and Anticipation

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We’ve been doing the happy dance around here the last few days because James’ neuropsychological evaluation came back and it was all good news. Great news is that the psychologist observed and documented independence on the letter board (communication partner is not assisting with answers) and wonderful news that James has what it takes to succeed in a challenging academic environment. We knew that from his home school work   but it is nice to see it on paper.

Well while we were celebrating,  James’ anxiety was building. Today, the first thing he did when Shannon arrived was tell her he needed to write about his anxiety and share it with everyone. He wanted his “team” to know how he was feeling and he wanted blog readers to know since many have autism and are following his journey.

I want to write about my anxiety. 

I learned that I did well on my recent psych eval, but now I have new worries. Next, I need to take the placement tests and I am nervous. What if I don’t do well? Shannon tells me that I can do anything I set my mind to, but I am unsure of myself. This opportunity is the gateway to my future and I want it more than everything in my past. People forget that I am just 17 – I am still learning about myself and the world around me. Yes, I have autism, and yes, I have successfully mastered many goals, but I am still human. I need support and confidence from my team, but I also need to voice my concerns. My team amazes me and I appreciate their encouragement. To say I am grateful would be an understatement. 

 

 

 

Another Hurdle Crossed

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Long before I learned that James would need a neuropsychological evaluation (IQ test) in order to receive disability accommodations at Northern Virginia Community College I read a book called Autism: Sensory-Movement Differences and Diversity by Martha Leary and Anne Donnellan. This is the best book out there on what the real challenges are for James and many like him who have a broad diagnosis of “autism” implying social and cognitive disability, but what in reality is a severe motor movement disorder.

One of the chapters in this book is an overview of the history of IQ testing (depressing) and how over the last thirty years people have begun to question the value of the tests and the whole idea of intelligence as quantity. The authors state, “What has never been properly taken into account, however, are the communication, voluntary movement and performance requirements needed to demonstrate competence on these tests. A non-speaking person cannot show knowledge on an oral test. A person with delayed response cannot show actual ability on a timed test. And a person with a certain movement difficulty cannot perform adequately on a test requiring dexterity.”

Fortunately for James we found a psychologist who was willing to figure out how to administer the tests taking into consideration the complexity of his motor movement disability. She had administered IQ tests to some other people who use spelling or typing to communicate and she did an excellent job. She allowed Shannon to hold the letter or key board for him but she was vigilant to observe and document that Shannon was not assisting him in any way with answers.

These tests were administered over four or five days (in different weeks) for 3 hours each day with a half hour break between sessions. If you had told me that James could do that even six months ago I would have strongly doubted it! But he did it and what a hurdle to cross! I say I don’t care what his IQ is and that I don’t believe they measure much of anything but deep down I am thrilled for him that the one who looks like he isn’t “smart” may be the brains in the family. How fun for him to know that he successfully took a test to measure his intelligence and that they didn’t change the test or dumb it down they just let him answer using his most reliable form of communication.

We’ll get the results of the test at the end of next week. I may not tell James the details, he knows the score doesn’t make a bit of difference for anything. Hopefully we’ll get all the needed information to the community college so they will allow a communication assistant in class and James will move forward into his future, believing that all things are possible.

I asked James to write about it:
This fall I hope to attend NOVA, but there are several hurdles that we must overcome. I say we because this goal is a team effort. One hurdle was to complete psych testing – my first IQ test. Understandably my tester was curious about my communication so Shannon made videos of me using all of my boards: mini laminate, large laminate, and wireless keyboard. She even made me show off my verbal spelling and talking! The tester accepted all of my boards, and even complimented our math system.
The tests were long, difficult, and demanding, but I did it, and I think I did well. I surprised myself with my accomplishments. I answered questions that Shannon did not have access to, I read paragraphs to myself, I figured out how to describe my math reasoning, I worked in hour blocks, and I regulated myself. I am unsure which I am proudest of, but I know I am proud. 
The immense impact this experience had on my life continues to unveil itself and compounds with each day. I look forward to the report, but I already believe it taught me more about myself. 
                                                                                                             

 

 

 

 

 

Acceptance

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James is finishing his second year as part of the Mclean Homeschool Group. They do a year end pageant featuring essays, poetry, music and such. James was asked by his teacher to write a poem for the pageant that would express the feelings he wrote about in his letter to Rick Riordan, author of the Lightning Thief. That letter explains what it meant to James to find his first real friend in the homeschool group. James didn’t write just one poem, he wrote four! Mrs. Evans selected these two to be read out loud at the pageant.

ACCEPTANCE

James, a boy trapped inside,

Autism barring the door to freedom.

A trickle of light streams through the lock,

Blinding against the darkness.

One year.

Eyes adjust, and crave more rays of hope.

The lock becomes brittle, but still fastened.

Then the brightest illumination strikes the still dull eyes.

One year.

Eyes adjust to the increasing demands.

Still trapped, but the door ajar.

Objects outside this prison come into focus.

One year.

The chains disintegrate under the force of the sun.

The door springs open,

The lock shatters as it meets the ground.

Autism pales against the light of heaven.

 

ACCEPTANCE

Fifteen years without true peers.

Apprehensive, afraid, and forlorn.

An autistic teen with a newfound voice,

A teacher unaware but willing to try,

An interested rising senior — a beacon of hope.

These three meet and all forever change.

One year elapses without regrets.

The senior embarks for college,

New students enroll in the class,

Autism concealed within the individual.

This second year, the student once segregated,

Sits amidst his peers, engages with friends,

And understands the meaning of classmates.

I am different, just like my peers.

 

 

Celebrating Three Years!

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Three years ago today James walked into a room and was asked by Soma if he would prefer to discuss science or history, he pointed to the “s” for science and from that point on everything changed for him.  It was the first time he was able to express his understanding of a topic in a meaningful way and the first time he was given a reliable means of communication. Imagine. When asked this summer what he felt the first time he used a stencil board to spell he said “hope, hope was eating me alive”.

In honor of this three year anniversary I thought I would post a picture of the very first “open” words James spelled with Soma on April 11, 2013 and then also repost a story he wrote a year later.  The words in the photo are answers to these questions: what color is the sky, what is your favorite color, what does yellow make you think of, what sport would you like to play, what would you like to work on next?

This story he wrote about a year later and I think it expresses so poignantly what getting a voice means to James, our family and all people who don’t have the ability to produce reliable speech.

ONCE UPON A TIME THERE WAS AN UNUSUAL BOY WHO COULD NOT TALK. HE WAS VERY LONELY. HE LIVED IN A TOWER OF SILENCE. THE BOY WAS ALWAYS THINKING. HE THOUGHT ABOUT ALL THE THINGS HE HEARD DURING THE COURSE OF HIS LIFE. THE BOY HAD NOTHING BUT TIME TO CONTEMPLATE LIFE AND PEOPLE IN IT. THEN ONE DAY HE WAS INTRODUCED TO A POWERFUL WIZARD WHO GAVE HIM A MAGICAL BOARD THAT TRANSLATED HIS THOUGHTS INTO WORDS! THE BOY WAS ECSTATIC! HE WAS NOW ABLE TO COMMUNICATE ALL HIS THOUGHTS. AFTER THE BOY STARTED USING THE MAGICAL BOARD HIS ENTIRE LIFE CHANGED. PEOPLE STARTED TREATING THE BOY VERY DIFFERENTLY. THEY WERE SHOCKED BY HOW MUCH THE BOY KNEW AND THAT HE WAS CAPABLE OF LEARNING AT ALL! THE BOY KNEW THAT HE HAD TO HONOR THE GIFT OF THE MAGICAL BOARD. HE MUST USE THE BOARD TO TEACH THE WORLD ABOUT OTHERS WHO ARE STUCK IN THEIR OWN WORLDS OF SILENCE.
THE BOY WAS ALREADY FAMILIAR WITH THE PERCEPTIONS OF PEOPLE ABOUT HOW THOSE WHO DO NOT SPEAK. HE HAD TO BLAZE A NEW TRAIL FOR THE OTHER SILENT PEOPLE. HE HAD TO SHOW THAT SILENT DOES NOT EQUAL STUPID. THE BOY KNEW THE BEST WAY TO LEAD WAS THROUGH EXAMPLE. HE USED THE MAGICAL BOARD TO SHARE HIS WORDS WITH THE WORLD. THE BOY WAS ADORED BY ALL AND SLOWLY LED THE SILENT PEOPLE INTO THE WORLD!

The Lost Soldier

Short story Image 1James’ Literature and Composition teacher gave the students this picture and said “write a short story of no more than 900 words based on this image”. She is always challenging the students in creative ways.  It does remind me of some of the lessons James has done with Soma and other RPM practitioners. I think once people are fluent on the letter board it is a great idea to write stories based on images.  I have not met a person with autism who doesn’t have a great imagination. When James writes for school he has help editing and he gets feedback from his teacher on outlines and drafts. His short story below:

The Lost Soldier

The snow berates the men as they await the train, and it obstructs the view of the women, who stand sheltered in the nearby makeshift station. Weeping streams from the station and echoes through the otherwise silent evening. The men look onward, unable to utter an intelligible word, because their thoughts transfix them. They stand, listless, reminiscing their past, mourning their unborn dreams, and realizing their uncertain, but vicious, future. This night marks the beginning of the Civil War for this small town.

            Throughout the following months, the women romanticize the proposals of marriage made in haste before the men left for the war, but they also focus on their responsibilities at home. One woman, Nadia, becomes the town nurse as the doctors move to the battlefields.

When the first train arrives to bring home soldiers, all of the women gather at the station. They anticipate joyful reunions and celebrations of love, but instead only wounded men disembark. Nadia tends to the men and listens to their stories of comrades lost to war. Despair looms over the town like a dense fog, and it feeds on love and hope until none remain.

Nadia, however, awaits every train, even after the wounded stop coming. The town, shocked by grief, fail to realize that Nadia still waits for her fiancé. After the last train, the town dismantles the makeshift station. Still, on Sunday evenings, Nadia walks along the tracks and passes the old train that never stops.

Five years after the end of the Civil War, Nadia still walks this path, but now as a married woman. She leaves flowers by the old station in memory of her lost fiancé who never returned home.

At work one day, an unfamiliar couple walks into her hospital. They travel up from Georgia on their way home to Virginia, but the woman went into labor early so they stopped             in this small town. Nadia recognizes the man, but surely it must be a coincidence because her fiancé died in the war. She continues to think over the possibilities while helping the woman deliver her baby. Her musings cease when the baby fails to cry and the new mother pales. She shouts for a doctor and he whisks the baby away. Nadia remains with the woman and successfully stops the bleeding that threatened her life, but if the baby wailed it went unnoticed.

Finally, the man asks for the nurse’s name who saved his wife. She whispers “Nadia. My name is Nadia.” They both stare at the other, transfixed by the effects of time and experience now etched into their faces.

“I couldn’t return. Not after all I had seen.” The man’s voice stammers, “I thought you would move on without me.”

Nadia pauses a moment, and then replies, “I did I guess. I am glad you survived. I will go check on your baby so your wife can see him when she awakes.” Then, Nadia leaves the room.

Hours later, as the sun starts to filter through the darkness, the doctor carries a healthy baby boy to meet his parents. While the family reunites with smiles and cooing, Nadia wanders her path to the old train station. She stops to look at the flowers she left yesterday, and falls into a heap beside them.

On his morning walk home, the doctor, her husband, finds her cold body still curled by the flowers. The unfamiliar new family leaves town before the doctor can mourn his wife at the funeral.