Senior Year

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August 2013  First week with Shannon and James starting RPM and the road to a “real education”.

 

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Four years later…the week before senior year in High School!

My Senior Year 2017-18                                                                                                                

            This coming Monday I begin my senior year of high school and my second year of college at NOVA. I am both excited and nervous. I look forward to the new challenges and learning new material, but my teacher of four years will not attend classes with me this semester or teach me any subjects at home. She is taking a break from my studies in order to spend much deserved time with her family.

            Four years ago we both began our journey with RPM and we have flourished together. She promised to stay with me through high school and she has been with me every step of the way. I was always her priority and I know that she will always be part of my family. As much as I am going to miss her and as nervous as I am to not have her with me, I know she is not really abandoning me. She has trained my team and will continue to care about my success and progress. I hope she will return this spring to again be my partner and teacher. In the meantime, I will have to become the person she always believed I could be.

            This semester I am enrolled to take two courses at NOVA, one film class with my home school group, and will continue my Spanish at home. I will try to write updates as I go, but we will see how busy I become. Thank you for following my journey and supporting me.

Managing Autism

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Lately I’ve been thinking about how much time and effort it takes James and me to manage his autism. He’s having a great summer and his anxiety, mild OCD and motor control have been pretty darn good lately. His motor control, when strong, allows him to spell reliably on a letter board or keyboard. This is paramount for him because he can quickly communicate about any physical issue he may be having, anxiety he is feeling or sensory overload he is experiencing. It also just lets him express his opinions throughout the day which is really something most human beings like to be able to do! When he can talk or rather “spell” about his needs– his and our family’s quality of life is immeasurably better.

James and I come into contact with a lot of folks who struggle with autism. Often they ask how James manages to use his board consistently and how he handles college classes? The answer is a long one and it is multi-faceted. I believe that a crucial part of helping a person with autism manage daily life and achieve their goals is rooted in diet, exercise and what is known as “functional” medicine. I’ll write more about that at the end of this post but in the spirit of helping people understand how James manages the physical aspects of autism we interviewed him last week. Here is the interview:

Can you describe some of the physical aspects of having autism that you manage or deal with?

I, personally, am always tired. Not sleepy, but exhausted. I have learned that I can manage, but sometimes it wears me down. I also struggle with perceptual interpretations of my environment, and on bad days the smallest things send me over the edge. I have learned how to better adjust to noises and to focus my attention, but it still requires extreme energy. If I am sick or over tired, then my control weakens so I easily lose patience and my ability to focus, both on listening and my motor skills. The day then tends to spiral downhill and I lack the ability to change the course.

You once said your body is a renegade who is at war with your mind. Is this still accurate and in what ways has it changed over time?

The war still continues. I have gotten better at predicting the renegade’s attacks, but I am usually only one step ahead of it. I try to request breaks before it can catch up and overpower my reasoning. Sometimes I am caught off guard or too tired to even think ahead. Stress also puts him in overdrive and almost impossible to control. Over time he has weakened so if he does gain ground his effect remains less dramatic, but I still can lose the whole battle if I am not keeping him at a rest. Then, I still rely on my communication partner to keep me sane.

Have you noticed things that impact body control?

I notice changes based on exhaustion, stress, new movements, and hunger. Any of these will keep me from being able to focus on my movements. Then, I tend to revert back to my rote and automatic movements which fail to help in the moment and just frustrate everyone.

How does food, carbs in particular, impact your ability to control your body and manage your symptoms of autism?

I have noticed that carbs and sweets give me energy, but mainly instigate my stims. They act like a drug and make me feel like I have less control over my thoughts and actions. I love their taste and crave them, but I choose to avoid them because I do not like how they make me feel and act.

How does exercise impact your ability to manage your autism?

Exercise allows my brain to practice controlling my body. Even walking gives me something to do without constant stimulation from electronics or people. It is freedom from stims and makes me feel more organized.

You have spoken about the amount of focus and skill that communicating using the letter board or keyboard requires. What helps you use it more efficiently?

I recommend starting in a quiet place with what Shannon calls silly questions. These reduce the stress so it is easier to focus. For fluent spellers, we still need prompts and support when in new places or extra stressed.

Can you elaborate a bit more on things that help you use the letter board more reliably or efficiently?

I recommend working on long tasks or important messages with someone who knows you well. Imagine texting on a new phone that has a different layout and autocorrects you differently. The comfort of working with someone you know and trust is like the phone you can text on without thinking. I need that person to know me so I can focus on my thoughts instead of the mechanics of spelling.

Can you explain what anxiety combined with autism feels like? Also, what have you learned triggers your anxiety and what helps to keep it at bay?

I think anxiety and autism should be comorbid diagnoses. Autism makes my brain work fast and limits my ability to control where the thoughts go. Once I have one worry it spirals out of control. The same is true for stims, OCD, and any strong emotion. My anxiety tends to flare when I believe something important is out of my control or when something will have dire consequences. The thoughts just intensify and I lose control of my emotions. When I feel it starting, I try to distract myself with something happy or logic my way out of the loop.

Does taking supplements make a difference in your ability to control your body?

I believe they do, but I trust my mom to know how to keep me balanced.

I have a few thoughts on helping James manage the onslaught of a body and central nervous system that are broken. Ever since he regressed we’ve used a biomedical approach to healing him–implementing a wide variety of treatments that included chelation, hyperbaric oxygen, diet, supplements, homeopathy, and a focus on fixing a very dysfunctional gut. Some things worked more effectively than others but I don’t regret any of it except that it was extremely time-consuming and expensive. And James felt really lousy for a long time, he didn’t feel decent until about age 11.

After James began communicating through RPM  I stopped being so rigorous about treatments and we all just enjoyed the fact that we had our son back! He could “talk” and we could get to know him. A year or two later we realized that all the hard work of  real school and using a letter board was incredibly demanding from a physical standpoint and we needed to refocus our efforts on healing his body. I hired a functional medicine health practitioner with the goal of giving James more energy and focus and less anxiety. We’ve been at almost 2 years and it is working.

If you don’t know what functional medicine is here is a definition:

The Functional Medicine model is an individualized, patient-centered, science-based approach that empowers patients and practitioners to work together to address the underlying causes of disease and promote optimal wellness. It relies on a detailed understanding of each patient’s genetic, biochemical, and lifestyle factors and leverages that data to direct personalized treatment plans that lead to improved patient outcomes.

We’ve done a lot of things that I won’t detail here but a big shift in my paradigm is the “total load” approach to wellness. I ask myself when helping James what is his total load right now? He already deals with a major disorder,  but what else is his body dealing with as far as exposure to toxins, stress, diet, lack of sleep or exercise? I’ve focused a lot on trying to give him nutrient dense, organic food when I can. He eats out a lot but we try to make it decent food while out and  really good food at home. We’ve dropped a lot of carbs and put in more clean fats. If I know he is having a stressful school day we try to give him more walks and down time. We’ve looked really closely at supplements that support the brain, the mitochondria and adrenal glands. It is helping because he can handle a lot more school work (which is his goal) and he is much more emotionally stable. He still has meltdowns but they are fewer.

I really hope and pray that a cure will be found for autism. And I hope that our government and medical establishment will be honest about what is causing our children’s bodies to become so ill and then start preventing it. But in the meantime  people with autism live courageously with very broken bodies doing the best they can and we need to do everything we can to help.

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.