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.

 

 

More than Expected

searchYesterday we received a copy of a college application essay from a young man we met last summer. I (Brooke) remember the meeting well because it was a rather spur of the moment visit arranged via text between two autism moms who often have trouble coordinating schedules.  But we managed to introduce her nephew to James and they spent about 30 minutes together.  Her nephew is the type of guy who makes you feel hopeful. He is handsome, smart, polite, kind, genuine, and even a great athlete. A lot of his family attended or attends the University of Notre Dame and it’s his dream to go there too. Notre Dame was a common denominator because early on in our RPM journey when James was just beginning to tell us his hopes he told us he’d like to go to Notre Dame and make his Dad proud. His Dad did not go there but wishes he did and is a huge Irish fan!

Six months later this young man sent us a copy of the essay. I forgot about it and I think James did too. What he said about James was so much more than we would have ever expected from a 30 minute meeting. James didn’t really respond when I read it to him but later in the day he came to his Dad and me with his letter board and said  “I am so proud of that college essay”.

I feel mixed about posting the essay (or part of it) on the blog because I don’t like to put James on a pedestal.  He is a normal teenager who struggles with the symptoms of  autism every single day. He has good days and bad but like most of us he longs to make a difference and to rise above his challenges.  This essay reflects the goodness of a young man who wanted to get to know someone who at least on the surface seems very different from him and whose life holds significant challenges.   I hope he gets accepted into Notre Dame and I hope both he and James get to follow their dreams.

Excerpt Below:

I took a trip in the summer of 2015 to Washington D.C. and unexpectedly learned a lesson from a single interview that set about my transition to adulthood. I went to work with my aunt, a passionate woman who, inspired by her son Ryan, started her own Therapy center for children with special needs. However, my story began that week in D.C. with a boy who showed me a different level of inspiration. My story begins with my friend, James. James is a 16 year old young man who has autism, and prior to recent developments, was taking classes at first and second grade levels. He now benefits from a method of communication which uses an alphabetical board placed in front of him to help converse. RPM or Rapid Prompting Method is a method developed for people who are unable to express their true thoughts due to autism or who are otherwise non-verbal due to other developmental disorders. James is now taking courses for his age level, writing his own sophisticated essays and best of all, has aspirations of attending the University of Notre Dame.

I went to visit James to discover this amazing process firsthand. It took me some time to think of what I wanted to ask him but as I sat with James, I let my curiosity do the work. I asked him about his favorite subjects in school, his favorite books and even his favorite part about Notre Dame. Then, I asked him my most thought provoking question, “What would you like to say to others about people with autism?” James responded verbatim: “I want them to know that I am all there. I can hear, I can see, I can understand.”…

Meeting James affected my life by showing me that I can find strength and prudence in someone who would otherwise go unnoticed. Learning this lesson has taught me to acknowledge the quietest students especially in my classes or on the track with my team.I am truly inspired by James to use my status as captain of the track team to act as a model of stability for the less confident kids.

I push myself harder now than I ever have because anything less would be a disservice to myself. James is a model for me and a significant inspiration for this ongoing trend of hard work…

 

 

 

 

Wise Words

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James’ sister Jane has a new friend in NYC named Alan. He is a wonderful man and very wise. Jane told the two of them about each other and here is their first email exchange!

Dear Alan, 

I am happy you work with Jane. She cares much about you. My advice to you is to keep writing your book. You have so much to teach us younger autistics. You have so much to give to us. Don’t keep it inside. You are an inspiration. Send me an email if you want. 

Lots of love, 

James

 

Dear James, 

Thank you for good advice. Open energy makes it hard to write. I get distracted by all the noise in my head. But you are right, I need to share my autism story. Hope you are not sad about your autism. It is a waste of time. Hear me out. Autism is not a very hard thing once we have RPM. Now we can share our selves in truth without expectations of failure to perform like weather talkers*. James, in Jane’s life the pressure to be something is enormous. In our lives no one decides who we should be because they don’t expect much. Thats why we are at an advantage. Remember to give thanks and love to your family. God bless. 

Love, 

Alan

*weather talkers refers to those whose conversations are mainly just small talk or  discussing the weather.