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.

The Power of Friendship

IMG_0394-3I have to apologize for the big time lag between posts on James’ blog.  The truth is that James is writing so much for his high school literature and composition class that I have trouble convincing him to write anything extra, even to post here! Fortunately a recent essay he wrote for class is perfect for “Returning James” because it talks about his experience meeting a peer who was willing to see beyond the outer exterior of autism and get to know the “real” James. This young man made a big difference in our lives, and we are grateful for him. The essay assignment is to write a letter to a book’s author and explain why it was particularly meaningful. The essay is below:

Dear Mr. Rick Riordan,

We have never met so you don’t know me. Until two years ago, my whole life was a guessing game. No one knew me.

I lived in my own head in an imaginary world. I dreamed of walking, talking, and being normal, but then I awoke in my autistic body, immobile. All day I thought about my world and taught myself how to do so many things. Yet I was also plagued by doubt. No one could hear the thoughts in my head or understand how I perceived the world. Maybe I was delusional. Maybe I really was as disabled as my teachers thought I was. Maybe I did belong in the special school. Then my savior showed me that my dreams were possible.

Consequently, I found myself living my intellectual dream in a high school group last fall. Unfortunately, because of my inexperience, I lacked the ability to belong in a group of typical peers. Did you know that communicating your intelligence loses its importance if you have no friends? I became lonely and hopeless, but one student sought my friendship and he changed everything.

This teen set aside time to get to know me. The real me. Despite his efforts there was a glass wall between us. He could not understand me because he never had a friend like me. Then he recommended that I read The Lightning Thief. We both love mythology, but I thought your series was too juvenile for me because I had a long list of classics to read. But I was wrong. Percy Jackson showed me that my disability can be my strength, but also that other people can understand my struggles.

The first chapter enveloped me in despair because everyone misunderstands Percy Jackson. His diagnoses include dyslexia and ADHD, but his teachers perceive him as intellectually disabled and a behavior problem. He struggles to maintain friendships because of his proclivity for trouble and his transient enrollment in schools. These characteristics made it difficult for him to make friends who really understood him. At this current school, however, he found a real friend in Grover. This friendship made me realize the power of perspective.

Perspective can change the outcome of anything. After years of teachers and students blaming Percy for his difficulties, he actually began believing them. When a teacher, Mr. Brunner, challenged Percy and believed in him, Percy doubted himself. Grover and Mr. Brunner saw Percy for who he really was, a demigod. Their perspective allowed them to see Percy’s strengths and Camp Half-Blood showed Percy that they were right.

You might be wondering how this plot connects to me because I am a teen with autism. I realized that I am similar to Percy despite our obvious differences. I doubted myself and refused to believe that someone could really like me for who I wanted to be. This new friend did understand me because he knew that people are more than they seem. He knew that my perceived weaknesses could be my strengths. He was my Grover. He did not know exactly who I was, but he had faith that I was more than my disability.

My friend’s faith in me encouraged my own faith in myself and gave me hope. In moments of need Percy sought water, his source of strength, but I use God’s love. My new friend showed me that I am strong and that I have the power of God to help me when I am not quite strong enough. All of my weaknesses I can also see as strengths. My limited speech makes me a better listener; my autistic body makes me a harder worker; my overwhelming emotions make me more empathetic. I am a person who can be more than I seem, just like Percy, all it takes is the right perspective.

Obviously, The Lightning Thief, and the characters in the series, changed my perspective of myself. My future used to be bleak, but now it is unlimited. I still have autism, but now I can see my own strengths. Furthermore, I have learned that people can understand me if I let them see who I really am, beyond my autism. I can be my own hero.

The autistic hero,

James Potthast

Italy

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I went to Italy in September. You are really lucky if you can visit Italy. Italy is a beautiful, delightful place. I am happy each time I remember it.

The Art is amazing. I loved reading about each unique church and seeing religious statues.

I also had a religious experience at all the art. I am a seeking Catholic who experienced so much apart from all that I had known. I learned that a reason people are into God is because of beauty. I love God because of our family. I am blessed to have a father who is an example of a loving God.

Anxiety, here, there and everywhere…

I have a friend who has a lot of experience with autism. She has raised a son with autism and taught elementary aged children with it for many years. She says the one predominant symptom that every single person with autism deals with (regardless of  severity) is anxiety.  Ido Kedar, author of Ido in Autismland says that he met a neurologist who said she thinks autism is a severe form of anxiety disorder which inhibits the ability to respond. I don’t think I would go that far because there is a definite motor impairment that affects James’ ability to respond but I now believe that I have underestimated how much anxiety stalks him and how hard he works to live with it.

I have several recent examples of this struggle. One was last week when we were planning on going to a museum and an IMAX movie.  Typically this is something James would enjoy but he was acting restless and whiny and I could not figure out why. I asked him what was going on and he said he felt anxious about our plans.  I said what part of the plan is getting to you?  He said “all parts of it”.  The thing that is sad is that everything we were planning was very familiar and it was just his Dad and me going with him.  But anxiety is part and parcel with having autism. I think its important to remember and to try and address it with therapy and other strategies.

James wrote about the anxiety he experienced during the dress rehearsal for the end of year school pageant in June.  I actually didn’t see the essay until recently but it struck me as a pretty awful way to feel. It was very sobering to hear what he experienced at the rehearsal. Fortunately after the stress of the dress rehearsal James enjoyed the actual event and it was a watershed evening for him. Here is his essay:

My First Talent Show
I spent the morning worrying and even cried. The tears ran down my cheeks, the screams escaping my mouth, and my hands acting on their own agenda.
This might lead you to believe that the evening ended in disaster, but let me tell you the whole story.
Anxiety plagues my existence. The dark cloud of fear extinguishes all hope. The world judges my every move. I am on display, a mannequin in a window, while rioters fight to break the thin glass. Knock, tap, thunk, smash. The glass shards assault my thin skin, blood trickles down, my emotions raw. Then I actually walk into the rehearsal.
Shannon shepherds me to a chair. I must focus on moving forward. Hands down, calm voice, quieting the voices from the smog. I see Shannon’s smile clearly, the love repels the darkness. Then figures emerge blurred by the doomed fog. Their fog weighs on my body like being immersed in pudding. Then I see a face, hear  a voice, and feel lighter; rays of sun filtering through storm clouds. A friend with strong character. 
The morning drags on. Stress, nerves, and frustration fill the air, drowning me. I vaguely remember walking on stage, but I remember the lights. They burned holes in my eyes, searing pain exploded in my brain, every  sensation overwhelming  my frail system. Then they disappear. Only dark spots remain. 
Later, I remember wanting to stay, but having lost all connection to the room full of people.  All I sensed was fear, stress, and depression, suspended in the thick air. Shannon and Lydia got me to the car and I felt relief flood over me. I was safe. They were safe from me. 
That evening when I walked into the room I felt pride, happiness, and lighter nervousness. I could breathe. The steady flow of kindness held back the creeping nerves and fed the calm trying to grow inside me.
It was glorious. I learned that the anxiety underestimated me. It feared the unknown, but I know who I am: James.

Receiving Communion

imgresEucharist Painting – Daniel Bonnell

Since the very early days of communication with RPM  it has been apparent that James has a strong faith and one that he relied on a lot for comfort and strength during his years of silence. He asked us over a year ago if he could start to participate in the sacraments of the Catholic church.  This weekend he had the gift of receiving first holy communion! We were so blessed to celebrate this in a small mission church with friends and family. The priest was kind enough to share James’ communion thoughts during the homily and we wanted to share them on our blog as well.

I am so delighted and grateful to be receiving my first communion today and to have my friends and family here to support my journey with God.

I am happy God set me free from silence and saved my life with RPM. Each opportunity to communicate is a gift I don’t take for granted. All of you are so important to me and teach me so much understanding. I really appreciate all you do for me.

All I am is due to my loving family and friends. I am so grateful I met all of my teachers, I could not be writing this without them.

God is so awesome and gracious. I delight to follow Him. All of you show me how.

“For last year’s words belong to last year’s language And next year’s words await another voice.” ― T.S. Eliot, Four Quartets

A few weeks ago James and Elizabeth discussed “futurist language” and the idea that every year new words are used and adopted by people that reflect the changing culture.  Here are James’ thoughts:

OUR WORLD IS CONSTANTLY CHANGING SO OUR LANGUAGE NEEDS TO CHANGE TOO. I THINK THAT LANGUAGE IS VERY INTERESTING. I LOVE THAT NEW WORDS EVOLVE TO MEET OUR NEEDS.
THE OED (Oxford English Dictionary) MADE SELFIE THE WORD OF THE YEAR. THEY TRACK LANGUAGE USE ON THE INTERNET. THE WORD SELFIE WAS USED LIKE CRAZY IN 2013.
MANY NEW WORDS ARE COMBINATIONS OF WORDS. SHMEAT COMBINES SHEET AND MEAT TO MAKE A NEW WORD TO DESCRIBE ARTIFICIAL FOOD. WORDS LIKE THIS CRACK ME UP.
AUTHORS OF A BOOK ON FUTURIST LANGUAGE HAVE COME UP WITH A BOOK WITH NEW WORDS THAT DESCRIBE MODERN LIFE. MONOPHOBIA IS THE FEAR OF BEING AN INDIVIDUAL. I THINK THIS IS A GREAT WORD TO DESCRIBE MANY WHO BLEND IN WITH EACH OTHER. TIME SNACK IS A WORD USED TO DESCRIBE THE TIME IT TAKES FOR A COMPUTER TO PROCESS INFORMATION.
Creative Writing: Imagine you are a futurist writer! Think about our modern world and the words we need. 
THE MODERN WORLD IS SO FAST. WE NEED TO THINK OF WAYS TO SLOW DOWN, SPEND MORE TIME TOGETHER AND RELAX. THE WORDS I WOULD CREATED WOULD ENCOURAGE THIS.
SIT DOWN WITH SOMEONE YOU LIKE AND HAVE A “RELACHAT“. THIS IS A RELAXED CHAT WHERE NO ONE IS IN A HURRY. ANOTHER WORD IS “CERETALK“. THIS MEANS TALKING ABOUT SOMETHING CEREBRAL. THIS IS MY FAVORITE THING TO DO!

“If one advances confidently in the direction of his dreams, and endeavors to live the life which he has imagined, he will meet with a success unexpected in common hours.” – Henry David Thoreau

cwvDm9asA_Lw9YsGTQNy8vWzhk4IMG_9861-110IMG_9930-155photo (23)Today was James’ last day of school   and he received his first “real” report card!  His A- grade in British Literature was just the icing on the cake of an amazing month and year. In May James participated in the McLean Homeschool Group annual pageant which is a night of student performances including musical, dramatic and literary readings. James and Shannon presented his essay on Pilgrim’s Progress and he also had a part in a very funny skit!  (Both are pictured above). He is writing a blog post describing his pageant experience but it is not finished yet.

And last but not least James was a groomsmen again, this time for his brother Joe. It was amazing to see what a difference a year has made in his maturity and bearing.  He has worked hard on his self control and it really shows. When I write I am always thinking about those readers who have children with autism. I want you to know that we never dreamed James would be living the life he is now and it just gets better and better.