18th Birthday

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Celebrating…

 

This year I celebrate my 18th birthday. I wrote a short speech for my party guests. “I love parties but the love I feel every day trumps any expectations I could have had for my birthday. I am often reminded of my journey and I am still amazed by  my own life.  I would be a very different person without my family, friends and teachers.”  I hope my journey inspires other families and spreads a new awareness of what autism really means.

I (Brooke) also wrote something last night for James’ party. Like any mother my kid’s birthdays are cause for reflection. I’ve shared before that James’ birthdays used to make me really sad. I am so glad that is no longer the case! Communication has made all the difference. I told our friends and family last night that at 18 so much  has changed. Not only can James fully communicate, he is receiving a meaningful and stimulating education, he will graduate high school next year and have a start on an associate’s degree. And the big birthday gift this year is an internship and small summer job. His friend and mentor Lydia arranged an internship at Endependence the non-profit organization where she works. James will get to write for the newsletter and do some shredding. And our favorite neighborhood restaurant Pie-Tanza is giving James the opportunity to work a few hours a week folding pizza boxes and such. We are grateful.

 

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Working at Endependence in the conference room!

 

And of course despite these wonderful developments in James’ life we still struggle. Autism doesn’t make anything easy and we all get weary of it.  But something else I shared at James’ birthday was a thought by author, Henri Nouwen. He said  “when we hold firm the cups of life, fully acknowledging their sorrows and joys we will be able to lift our cup in human solidarity… we can become a community of people encouraging one another to fully drink the cups that have been given to us in the conviction that they will lead to true fulfillment”.

Transition to Adulthood

When I was a child, I talked like a child, I thought like a child, I reasoned like a child. When I became a man, I put the ways of childhood behind me. For now we see only a reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known. I Corinthians 13:11-12

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James had an in class essay last week and the prompt was to write about the transition to adulthood. What he chose to write about was really interesting to me because it touches on the complexity of raising and relating to someone who could not reliably talk from ages 2 to 14 and who then gained almost full communication through spelling.

As he explains in the essay, we his parents had so much more control over his life, his activities and his choices than either he or we desired. For 12 years (I say 12 because he had typical baby toddler speech until age 2) we had no way to  understand what he really wanted except by guessing, intuiting, observing body language, negative outbursts, and lots of trial and error. It was extremely exhausting, sad, and exasperating to name a few aspects of it. And it also created some very negative patterns of relating to one another.

James became reliant on me and his father for survival because if you can’t express basic needs and wants someone has to learn how to read your mind or you won’t make it. But after years of this unfortunate reliance when he finally could communicate it was hard not  to fall back on the old ways of relating. Easier to have an outburst and hope your parents can read your mind rather than spell it out! So much easier to stay a child without taking responsibility for your behavior especially when you have a significant disability. But this essay is written about shedding the old ways and taking on the new. Its about growing up and becoming a young man.

Why?

Why? That question plagued every conversation for months. To be fair, I wanted to explain everything. I wanted to provide all of the reasons. I wanted everyone to finally understand me. One problem: I had few justifiable answers.

                  My first conversation began when I was fourteen, and suddenly I could actually explain and defend my actions. When asked why I grunted in anger, I could tell my tutor that I disliked her tone. When I cried in frustration, I could recite all of the reasons my life felt unfair. I thought these explanations made me an adult. Eventually, however, I realized my error.

                  As a child, my parents controlled my life, understandably. Adults gave me choices that I could select, but these choices contained only two or three pre-approved options. Even before I could converse, I made these choices: computer versus music, mom versus dad, cookie or no cookie. Seems wonderful, right? For a toddler, perhaps, but for a teenager, I easily became annoyed. I wanted more options – I wanted to make my own options. At the same time, however, I wanted my family to already understand what I wanted.

Once I could compose responses to questions, I thought I had the answer to my prayers. My options expanded, and my explanations, requests, and choices actually impacted my future. When I asked my tutor to read me a book, she did! But then five minutes into the reading, boredom set in. So then I grunted my displeasure. She just stared at me, perplexed. She questioned why I grunted instead of using my letter-board to talk to her. But I countered that she should have realized I grew bored and switched activities to engage me. This situation repeated itself innumerable times, in various forms, over the following year.

                  Prior to communication via my letter-board, my choices impacted only my immediate future. For example, I chose what food I ate on my plate, but I could not explain why I disliked a particular food. Once I learned to communicate, my parents wanted to learn why. Why was I annoyed, why did I become frustrated on that outing, why was I displeased. Suddenly I needed to explain my reasoning to adults, and they found my explanations lacking maturity. They rejected my reasoning that a friend greeting my tutor before me validated my grunting outburst. They also failed to reassure me when I cried because they ignored me, when really they needed to use the bathroom. Finally, I could explain my actions, but my communication only proved my childishness.

For two years, I falsely believed in my own adulthood. Then, one day in my literature class, I realized the truth. In order to be an adult, I have to communicate before I react, instead of expecting others to anticipate my needs.

I realized that any child can answer the question “why”, but adults make responsible choices and live with their own consequences. From that moment on, I understood that grunting my displeasure, while effective to resolve the immediate issue, failed to enhance my future. I spent the following two years working on changing my own perception of the world and my mindset of how to handle my challenges. I made mistakes and I recovered from regressions, but I understood that I needed to change.

Now I must make decisions about college, decisions which will affect my entire future. I know that I still have much to learn, and, more importantly, I know to ask for help instead of expecting others to anticipate my distress and placate me. My adulthood began when I could answer the question why to myself and regulate my own emotions. My parents shifted from assuming my reasons for my behavior to holding me accountable for my actions. Basically, at the age of sixteen, I grew from a toddler to an adult overnight. I look forward to continuing my transformation.

Perspective

“We shall not cease from exploration
And the end of all our exploring
Will be to arrive where we started
And know the place for the first time.”
T.S. Eliot, Four Quartets

James wrote his third LAL essay in November. This yearly assignment (given by Mrs. Evans his advanced composition teacher) is a letter to the author of a favorite book describing how the book effected his life. This letter is to John Gunther the author of Death, Be Not Proud written in 1949 by a father whose son died of a brain tumor.

Dear Mr. Gunther,

            Last winter, my teacher assigned Death, Be Not Proud for my book report. Given my usual reluctance to work during school breaks, I should have needed significant reminders to read the book. I became immersed, however, in your memoir. I read throughout the day, including while walking in my neighborhood. I laughed, cried, and exclaimed in frustration, but then I closed the last page and felt the void fill with stories of my own life. I outlined my own story and attempted to organize the various perspectives of my progress to adulthood. My struggle to complete this task reinforced my appreciation of your work.

            My first thoughts while reading the memoir consisted of the parallels I drew between my life and Johnny’s life. You see, I, too, suffer from brain dysfunction, mine with unknown cause and no known cure. I, too, have endured multitudes of treatments with various levels of success and costs. I, too, feel hopelessness when I ponder my condition. These similarities came easily, but the deeper comparisons required more insight.

I evaluated Johnny’s response and my response to challenges. Although I admired Johnny, mostly because he remained kind and respectful to others, I found myself lacking compassion for my family and teachers. Until I read your book, Mr. Gunther, I lacked the opportunity to discuss struggles with a survivor – with someone who had earned the gift of hindsight. My available comparisons might be older than I am and therefore seem a reasonable example, but they continue in their struggle against their own challenges so they lack hindsight. In addition, their challenges are so similar to my own that any slight differences in our circumstances manifest as glaring excuses for our differing perspectives. But when I compare myself to your son Johnny, I cannot hide behind excuses. The way he lived his life provides a clear comparison that differs enough from my circumstances that I must admit my faults.

My brain dysfunction, autism, claims the life of the living for an entire life span. My diagnosis as a toddler condemned my future, but, unlike a tumor, autism carries a life sentence instead of fatality. Because I could not communicate for fourteen years, I lived as a prisoner in a laboratory and was unable to demonstrate my abilities or explain the effects of the various scientific studies. Often, even now, I use my accumulated frustration as an excuse for my current attitude and behaviors, despite the progress and freedoms I now enjoy.

Somehow, while studying history and sociology, I missed the connections provided by previously enslaved and imprisoned Americans. How many thousands of people did the Civil War free from servitude? From what I recollect, those previously enslaved people became the neighbors of their masters. How many convicts earn their release from prison only to return to the very society that imprisoned them? If I read a recounting or witnessed these freed people become bitter I would judge them for having thrown away their opportunities. Still, I usually failed to draw connections with my own bitterness.

Until I read Johnny’s story – your story.

For once, through what you wrote, I identified my own struggles inside the person I aspired to be like.

While reading, I compared my drive for an education to Johnny’s. At first, only the similarities registered in my thoughts, but then the devastating truth dawned on me: Johnny’s tumor kept him from attending school, but he nevertheless continued his education and fought to earn his diploma from Deerfield Academy. With your help, he broke through the barricades placed before him. Of course, at times Johnny became frustrated, annoyed, and even angry at his limitations. But somehow these emotions motivated him to persevere.

I, however, turn to self-pity and allow my emotions to capsize any lifeboats sent to rescue me. I strive to catch up with my peers, yet the pressure of success can overwhelm me and squelch any progress. Now, when I begin to feel this intense weight, I remind myself of Johnny and how he persevered. I realize that success today requires me to take a breath and remain calm – despite my challenges. I want people to remember me as a student who persisted despite hurdles, but I also want to be remembered as a friend and a person that people want to be around. Frustration and self-pity will not achieve that goal. Ever!

Once I digested any parallels and lessons I could find, I began to ponder the differences between Johnny and me. The most obvious difference revolves around our home lives. Despite the daunting rate of divorce in families with autism, my parents remain happily married, and they provide for me a family that I cannot rightfully complain about. In fact, I cannot imagine my life with divorced parents! I have three older siblings, two of whom married amazing wives, and all of them also build my support network. I cannot imagine facing my challenges without all of these family members.

How did Johnny manage in a separated family? How did you and your ex-wife manage to coordinate his treatments and your time together? I keep wondering if your family provides an exemplar for true love and devotion, or if you just represent a family who reunited because of necessity. I now wonder what my family would be like without my autism, but then I realize the futility of such ideas because they will never be a possibility for me.

All of us seem to be born into our circumstances. Yes, we strive to achieve what we can, but some things we must admit we cannot change. Despite some theories about autism, I do not believe my parents caused my autism, but I still wish I knew exactly what did. What’s more, I cannot help thinking about the possible changes that could have forever diverted our course. Do you still wonder about what Johnny’s life could have become? While reading your memoir, I certainly never blamed you or Johnny for the tumor, but I can imagine that you must have been plagued by guilt. I see such guilt in my own family and I realize how much my diagnosis must have hurt my parents.

Until reading your perspective of Johnny’s illness, I never truly thought about my life through my family’s perspective: how my parents felt, how it changed the life my siblings were accustomed to, and how they all suffered. Instead, I felt only my suffering and how my family affected me. Seeing Johnny’s struggle through his parents’ perspective – your perspective – gave me a view outside of my own self-centered life, and I now see my family as a family who stood together to create a buffer for me. I hope that you healed after losing Johnny because I know that I never want people to suffer again because of my challenges.

Thank you for writing Death, Be Not Proud so that I could finally realize another important aspect of my own story thus far. You provided a perspective that I would never have attained. I now cannot live without that perspective.

 

Yours truly,                           

James Potthast                                   

 

Class of Partitions

imagesAn essay written in class answering the question What matters”? 

Class of Partitions

            I, at fourteen, sat in a class of partitions. Each student had his own aide and his own assignment and had to work through another mindless day. No plays, no novels, no textbooks to be seen – and especially not discussed. So what did I do? I matched. I repeatedly failed to match colors, objects, and numbers. Because of my experience, I lost hope in education, and I lost hope in a meaningful life.

           Then I finally met a teacher who taught me to demonstrate my understanding. I believe that every person deserves to be taught at any age, at any complexity, and with material that matters.

            Luckily, I was only fourteen. At what point do we give up on education? People “graduate” regardless of their abilities and knowledge. We treat these individuals like their abilities are now set. But really we have just neglected to teach them. We forget the plasticity of the brain when the brain exists in a person society has, at some point, labeled as less desirable. Most adults eventually have a second career, but the defective humans – those with disabilities, felons, or school drop outs – are limited at twenty-one, or even earlier.

            For students stuck in the educational system that attempts to train them like animals, they, too, deserve a meaningful education. These students deserve teachers that teach. Despite grades, level of output, or behavior, the learning material should be engaging, meaningful, and interactive! Matching is not curriculum! Students deserve to be taught stimulating information in addition to life skills.

            I lived in the class of partitions. I know the demoralization of a school which merely fills time and fails to stimulate meaningful thoughts. This education fails both individuals and society. I believe – I know – that all people deserve a stimulating and meaningful education.

 

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.

 

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.