Helping Hand, Not Hand Holding

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James continues to have the opportunity to write for the ECNV newsletter. Its a great organization committed to helping people with disabilities gain independence. The prompt for this newsletter was: “A lot of times we see parents with disabilities shelter their children from the world, instead of encouraging them to follow their dreams. Their intentions are to protect them, but this often results in the children not being able to live up to their full potential. For this newsletter, please describe your experience with this scenario and what kind of side effects can come from sheltering persons with disabilties as they mature”.

“Helping Hand, Not Hand Holding”

                  My experience with my parents has been one of growth and evolution. I needed a teacher, and they provided. I needed a companion, and they provided. I needed nutritional support, and they provided. Throughout my life my parents have provided me with all of my opportunities. I am appreciative of all their support, and now I am ready to be more independent. I would like to care for myself. I see my future including a meaningful career and independent living. Because of all their support, I have the ability to freely express my thoughts to them through my letter board. I have been able to share with them my goals to be an independent adult. I know it will not be easy, but they are supporting me in this journey.

                  Although I can’t say they have sheltered me, because I have been able to see and experience many new things, I think my parents have protected me from failure to a certain extent. I think this type of parental protection happens in many cases. For anyone seeking independence, failure is part of the journey. When parents take the possibility of failure away, even with the best intentions, an opportunity to learn and mature is denied. Many adults want to make life easier for the next generation. However, failing is a main ingredient in the recipe for success. In the case of young adults with disabilities, we are seen as fragile and helpless, not to mention incapable. At times, believing in myself feels impossible. I can imagine that at times it can be scary to let your child fail, especially when you have been providing and protecting them for so long. However, for those of us with limited abilities in speech, motor movement, or emotional regulation, we need to become strong individually and learn to count on ourselves. We also want to feel proud and accomplished, and even disappointed some times. These feeling are ones we can own and truly value.

My parents have always been willing and able to give me what I needed. Now, what I need from them is to let me provide for myself. I am still a teenager who wishes for freedom to do as I please, but each day I need a team of people to help me care for myself. Next year, each one of the adults in my life will only be around for minimal support. Each one of my tasks will be done by me, solely. However, in order for this goal of mine to become a reality, a lot of work on my part and also my parents and support team will be required. It will take a new mindset. Currently, I let my parents facilitate things around me. I will have to allow them to take a step back. I will have to experience failure and learn from it. This will include everything from everyday tasks, to communication, to transportation. I will have to be uncomfortable. I am starting to realize that growth happens when we are uncomfortable and open to learning from those experiences. As children, just as much as our parents, we like to stay in our comfort zone. In order to reach our true potential, we need to be open to change and our parents need to let us be uncomfortable. I am thankful for my parents being so aware and invested in my future. They believe in me, that is the best gift I can receive from them.

 

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Religions of the World 231

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James is taking an introduction to world religions class at Northern Virginia Community College this semester. He has a natural and deep curiosity about the world and it’s really satisfying, after years of limited education, to see him have access to a wide range of subjects.  This assignment was called an “experience paper”.  He had to visit a service of another faith and write about it. He chose to go to a local mosque to the noon prayer service. (A heads up–this is a long paper!)

On November 3, 2017, I attended Jumah, or Friday prayer, at 1:30pm at Dar Al-Hijra Islamic Center located at 3159 Row St. Falls Church, VA 22044. Dar Al-Hijra is a place of worship known as Masjid, which serves the Muslim community. I am Catholic, but very available to learn about other faiths. I attend mass every Friday and Sunday with my father. I have received my sacraments and have found a great sense of identity and purpose because of my faith. My mother, who is also Christian, is not Catholic. Having two faiths in my household has led me to be eager to learn about the many religions of the world. I chose to attend a Muslim service because a lot of negative attention is received by the Islamic community. I wanted to learn more about the faith and make my own thoughts based on my experience.                                                                                                                                                                                                                                                                                                                                                  Upon arrival at Dar Al-Hijra, it was obvious that there would be a lot of people at the service. We had to find parking in a nearby neighborhood and walk to the entrance of the building. The building was gated off and there were several armed security officers walking around the exterior of the building as well as in the main lobby near the entrance. The building was large, but not tall like a cathedral. There was an architectural piece that stood separate from the building. It was narrow and tall and had a crescent moon at the very top of it. I was educated on the significance of this piece of architecture after the service. It is a minaret and has traditionally been used as place where holy men climbed to the top in order to call out the call to prayer. I was told that the noise ordinance did not allow for the traditional use of the minaret, and an intercom system was used instead for the call to prayer. I also noticed a few vendors just outside the entrance doors selling some religious items and informational material. In the main lobby, there was a table with lots of packaged food stacked on top of each other. I quickly noticed that everyone surrounding me were men. We were greeted and asked to wait for our guide. I could hear that a service was already going on.

To begin the service, there was a call to prayer over an intercom system. At this point, we were guided to a large common area room with rugs covering the floor. I joined hundreds of men in removing my shoes and finding a spot in the room. I chose to sit in a chair, while my communication assistant and most other men kneeled. There was an older man, the imam, with a microphone standing on the front stage area that began to talk and give a sermon, in English. The imam was wearing a long robe and a cap on his head. He addressed everyone through a microphone. There was another room of men who also listened to his message through a video and audio system. He spoke about religion and it being a guide in our lives. His message was one about family, equality, and compassion. The care for children was discussed and also the role of men and women in the family. It was urged to value young daughters and to not overlook their importance in the family. He preached that many times boys are valued as more important members of the family as they grow older in to young men, but that women are the caretakers of the family and will one day be the ones to step up and take care of parents in their old age. Throughout his message, everyone was very quiet and attentive. There was very little movement or direct involvement from the men listening to his message. The general atmosphere was of extreme reverence and respect. After some time, the imam began to speak in Arabic and everyone stood. At this time, I stepped to the side and observed their prayer ritual. As they chanted, everyone stood in reverence, then bent forward, then kneeled. Each position there was prayer in unison. They repeated this three times. Once the service was concluded, everyone retrieved their shoes and began to exit, greeting each other and giving blessings to each other as they left. Many people bought lunches on their way out, as they were on their lunch break from their work day.

The experience of attending Friday prayer at Dar-Al Hijrah was eye opening and informative. Through attending the service directly, I noticed many familiar aspects. The standing, kneeling, and bowing during the final prayer were familiar to me. It resembled the kneeling prayer that I participate in during mass, before receiving communion. It was immediately evident how important this service and prayer was to all that participated. I could see that the faith and religion held a high priority in the daily lives of its members. There were men from what seemed to be many different walks of life. Some were dressed in suits, some long robes, some in work uniforms, and some were students. This service was during a weekday, in the middle of the day, yet hundreds of men came on time to participate. We were also shown an area in the bathrooms that was used to clean hands, mouth, and feet prior to attending the service. Our guide explained to us that this was an act of respect. Cleaning and doing so in the name of God was a very important step in participating in the prayer service that they hold to the upmost importance.

There was definitely an overt distinction between men and women. I did not actually see any women, beside our guide, in the duration of our visit. I was told that women use a separate entrance and participate in the service in two separate rooms. One room is for women, and the other is for women with children. Both rooms are much smaller and have far less participants than the two large rooms for men. I understood this to reflect the very traditional beliefs and roles that have been taught in the Islam faith. It was evident to me that tradition is very important to the lives of Muslims. Roles and expectations of men and women are intertwined and directly impacted by the teaching of their faith. Unlike other religions, the traditional values and conservative nature of each service is very important. Expectations of reverence, obedience, and order seem to be an unspoken truth among all members. This is clearly passed down to their daily living, as it was preached during the sermon.

Another important interpretation I gathered from my visit to Dar Al-Hijra came directly from my interaction with our guide, Fazeia. She was extremely helpful and passionate about educating us and answering any questions we had. She gave us important information about the traditions of the faith, the service, and the expectations of the daily prayers. However, what stood out the most about her leadership was her desire to educate for the purpose of creating tolerance and equality among different faiths. She was direct about her mission to unite people and help rid her community of prejudice and hateful behaviors. She quickly described many, many services that are provided by Dar Al-Hijra to the community, regardless of their faith. Some of these services include a weekly food bank, juvenile delinquent mentors, tolerance information sessions, family counseling, tutoring, homework help, and much more. It was eye opening to hear all of the work that is done by the Islamic community to support not only each other, but everyone. As she pointed out, it is rare to hear about the positive things that are done by a Muslim Community Center. Instead, the public generally associates acts of terror and violence with such faiths. Fazeia explained that so much negative and untrue information is shared about their faith by the media, that they have a “green screen” in the library for television interviews that are so frequently needed to address public situations. Fazeia definitely provided me with another perspective of the Islamic faith and helped me to understand the community on a more personal level.

Overall, I am very grateful for the opportunity to learn about another faith. The experience allowed me to observe, participate, and ask questions. I saw some similarities in rituals between Islam and my own faith, Catholicism. I also saw some very different traditions and was able to learn about their origin and purpose. Most importantly, I was able to connect with someone who explained that the pride and importance of their faith is just the same as anyone else’s. I would hate to have to constantly be defending my faith and its members from false or generalized accusations. I take away a new perspective from this experience as well as some valuable information.

 

Finding Adventure

James’ new English teacher gave them an “adventure project” to work on. They were to develop an idea of an adventure, do the adventure and then write about it. Here is James’ essay and a few photos as well!

Finding Adventure

            I recently went on a trip to Italy. This was my second time visiting Italy. My family and I had an amazing experience a few years ago, so we decided to make the trip again. I knew it would be full of discovery, sightseeing, and bonding. However, nothing could have prepared me for the adventure that lied ahead. Among all the tours and planned itineraries, there was a spontaneous moment that took place. I don’t usually do well with unplanned events, so this was a challenge as well. I have some issues with anxiety in new and unfamiliar situations. Little did I know this moment would turn into a true adventure. Remembering the basic details does not do it justice.

I always wanted to swim in the middle of the ocean. I did not realize, however, that it meant first jumping off of a boat. My family and I were on a boat on this particular afternoon, and we sailed to the middle of a bay with a beautiful view. Naturally, everyone was in their bathing suits. In a spur of the moment idea, my brother suggested we jump in the Tyrrhenian Sea. Nearly everyone was eager and excited to make the jump. My dad turned it down quickly and made it clear he was just a spectator. I was on the edge. I could not decide if I could really have the courage to jump. My nerves were out of control and I could only think about the depth of the ocean. I bent down to look at the water, only to frighten myself even more. My echo of screams was ringing in my ears. Now, everyone is angry that I won’t jump. I am overwhelmed with excitement and fear. I hear my brother on the boat say, “Go James!”, but I doubt anyone heard him, because too many people were shouting at me. Now I boldly decide to jump.

I step off the edge and drop in the water. I rush underwater a few feet with salt rushing in my eyes, nose, and mouth. After a few seconds, my head breaks the surface and I see my brother in the water next to me. He has a big smile on his face, as I am still opening my eyes and checking my surroundings. I also discovered another comforting sight next to me, a swimming “noodle”. I latched on and started to feel relief. I heard laughter and cheering from my family. I began to laugh with them, and was finally enjoying the moment.

            After I got back on to the boat safely, I immediately felt relieved and accomplished. As everyone was congratulating me, my feelings of fear and anxiety were transformed into adrenaline and pride. Now I’m reflecting on this adventure and I realize that my anxiety is such a controlling factor in my life, I rarely let it develop into other emotions. I focus intently on what could go wrong, and don’t allow moments to pleasantly surprise me sometimes. On this adventure, I surprised myself. I am happy to tell this story, and to share one example of the possibilities of stepping off the edge, and just jumping in!

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.