CHAPTER 1
"Who Am I"
Reality is fundamentally non-fiction, however when I found I was facing indescribable daily occurrences, my non-fictional reality became completely illusory. This illusionary life required me to master the art of compartmentalizing; it had become the second and third person of me and I believed this process was necessary for my salvation. However it only provided an escape, it did not provide the knowledge that I needed to connect the divided me to a singular entity with a definable definition.
In having no identifying connection to my own direction or purpose I was unknowingly compounding the illusory factors that governed my life. Subconsciously I knew that to find my own required answers I would need to unravel all the meticulously created files that were of my own creation and had taken years to orchestrate.
The process of de-compartmentalizing in my mind did not entail finding a perfect daily balance: it was strictly an avenue of finding the point of integration, or more precisely the cross over in this unknown personal definition. I knew this separate person was my own divided creation and I knew internally that I was the product of my environment. The simplicity of this was my environment had coordinated my behavior and my personality became completely compatible with my environment.
The conclusive evidence brought forth the understanding that the divided "me" was the byproduct of an environmental change. But when and how had I become this byproduct, what had occurred to bring forth this life altering transformation and division?
Having the time to find who I was within the parameters of how I had to function seemed like a simple process, but yet trying to achieve this while in the middle of ever changing chaos was a complex endeavor. I had become so preconditioned to this existence and so cut off from worldly extravagances that pertain to any form of self that I never gave it much thought; I just was because I just had to be. I couldn't escape this feeling of consumption, my mind would not let me enter into this zone of I need or I desire, my whole focus was strictly on my ability to persevere myself within this world and was limited to a moment to moment bases. "Me" as the singular had become the insignificant irrelevant factor, who was required to function without an identity.
The moment I internally accepted that I had lost myself and my identity I became radically charged with needing to know the; who's and why's of how this had transpired. I now faced this reality of literally needing to connect the dots of occurrences in my life; I needed to go beyond just existing, I needed to have my own individuality.
The inner need to find myself or the explanations to my existence began as stolen moments away, contemplating how I ended up being who I am? How did I get here? Everything that happens to us can indeed create who we are, unless we decide differently and have the desire and the ability to change it; the stark simplicity of preventability and that unambiguous harsh reality of responsibility.
The basic question of "Who am I?" started with what I deemed as a small insignificant answer. My first conclusive response was "I am a Mom" however that simple insignificant answer opened the flood gates to the reality of "What and Who" being this Mom entails.
"So who am I?" I am a Mom to child with multiple disabilities, who assiduously tries to enable my Child to succeed; I am always proactively trying to find suitable supports. I have become exhausted within a society that has little understanding, I am a Mom who has been on more than one occasion referred to as the one who just does not understand that there are no supports; there are no programs and interventions. Those spoken words that I listened to regularly, "You Have To Understand; It Is Beyond Our Control There Are No Supports", I ignored them and tried again, hoping beyond hope that they were mistaken and that my Child and myself would be supplied with what we desperately needed.
I am a Mom who many have attempted to avoid; I am depicted as opinionated, pushy, relentless and persistently demanding. I have witnessed the looks when I enter a room, I pack the attitude. I have to, I have no choice; I have a child impacted by FASD! I am impacted by FASD! My life is no longer the depicted status quo of normal; I am not your average Mom. I want to be perceived as intimidating; I have a Child who relies on my ability to achieve all that is required just to function without turmoil and have some semblance of success.
I am a Mom who lives in fear that her Child will be used, mistreated and or victimized. I am a Mom who desires the best for her Child, I spend every day in the prevention mode, the teaching mode, the external brain mode, I am the tool my Child depends on to make it through the day. My Child lives in fear of the day I won't be there, and I live in the fear of the day that I can't protect my Child. "Welcome to this life of FASD."
This Child that I fear for every day is an adopted Child, who I love very deeply and cherish with all my heart. This Child has constituted the foundation for me to utilize the strengths that even I never predicted or fathomed that I would have within. Although I have to admit the journey I had to travel to achieve this inner strength was a hair raising experience!
In becoming this parent I was never provided the appropriate manual to raise a child diagnosed with this disability and I have yet to find that specific manual that would or could guide me through the throes of FASD. I live in a society that is so diverse and has many self help books and diagnostic guides but yet here I sit still trying to figure out each moment that presents itself. FASD has so many faces and disguises that in order to achieve the pretence of a perfect balance in my life, my only option is to read the whole library and even then something new will present itself and I am back to the drawing board. I am a Mom who lives precariously off balance "I have to" "I have no choice" this is my precarious norm.
When the wonderful opportunity came forth to have another child, I thought the only thing I needed to take into consideration was whether I was up to being a parent again as my only Child at the time was already fifteen. There was no disclosure or conversation pertaining to the possibilities of FASD; I was unaware of the disability and completely blind and ignorant to the affects of alcohol on the unborn child.
This factor alone was hard for me to comprehend; how can this be so hidden, when in fact FASD has really been a known disability and a factor for many since the early seventies. How can my Child be born in the late nineties having this as a factor? Why is it so secretive? Why is it so with-held from the general population? All valid questions; although the answers are all written within the confines of systematic bureaucracy, that entail complex rules and regulations; and a process to which I understand takes time to implement and change.
Whether it is a biological Mothers Child or that of an adoptive Mother's, the causes of FASD are truly not as divulged as they should be, it would be impossible and unjust to hold the parent responsible for something that seems to be the unspoken. Where are the warnings? It seems to be on the hush, hush; it seems to be a taboo subject but yet it dramatically affects so many lives. It is a life time of uncertainty, fear, exhaustion and guilt; that I know firsthand leads to thoughts of personal inadequacies; it is a place filled with so many emotions that in many cases overwhelm and consume.
The choice and the reality for most that choose to be a parent is the time factor, do we have enough time to devote to being a parent, can we emotionally handle giving up at least eighteen years of our lives to nurture a child into adult hood. Beyond preparing for the time factor and the devotion or nurturing, there are always health concerns, however these concerns are preparations for what is beyond control, not with what lies within the confines of preventable.
For me it was with great thought on whether I wanted to be a parent again, it was a choice, I chose to be a parent again, I chose to be there for another child for what society statistically and realistically sets the standard and deems as the time frame of eighteen years. I was prepared, I was involved and I had factored in a myriad of reasonable possibilities.
This choice I entered into knowing the expected duration and the expected requirements I felt were implicit of the terms of what was normal expectations. Although as time went on I realized the contract had been altered it was changed without me having prepared myself for this. My right to choice had been removed, I was now in a situation that I had no understanding, and there were no easily found answers. Me someone with a post graduate education, someone who had acquired the ability to critically analyze and find a relatively stable conclusion to most situations, here I find myself standing in this zone where I felt completely illiterate to the situation that I was facing.
The governing dynamics of parenthood were not as they should be! My thoughts were in a state of disarray! My thoughts went from Obligation, to guilt; wanting my life as it was, then to the unconscionable thought of regret. The defining moments when my thoughts took on those hidden embarrassing dimensions of "I changed my mind"!
The moment the thought of regret was internalized and processed I could not take it back, it may have been for just that one millisecond of time but my mind set was focused on the facts; "I still felt and thought the unconscionable." At that moment I became this victim of my own self persecution, I tortured myself on an inner level every moment of everyday.
This inner admission of my thoughts became the moment of sacrificing my dignity of who I thought I was. I no longer had the ability to stand in my own self-righteous bubble that I was this person who had the right to keep herself with high moral integrity. I could no longer feel this pride in self that had been my rock; I was not who I thought I was.
The intensity of emotions even lead to that of rage, this deep level of culpability; who could I hold responsible for this lack of knowledge. Who could I attack and say you did this, this feeling I held that I had been mislead they had deliberately lied to me by omission. I knew however if I followed through with this attempt to make them responsible it would undoubtedly lead me in the direction of having to spill all my own inner thoughts and fears. This place of complete truths, and unavoidable ownerships: the truths of their omissions that angered me and my own unconscionable truths that had indeed consumed me. It was inescapable! What would I gain?
These feelings that I held deeply, I had no release, I was embarrassed, I was guilty, and I was convicting myself; the conviction that created this self hatred for thinking or feeling a realistically natural set of emotions that would not be limited to just me. I knew I had to deal with this before it swallowed me; I had to face the reality of facts. The reality of my reality was that this ultimately was not about what I felt or what I had to deal with it was and is about this child who needed me. This child who did not choose this for their life path, this child who will be impacted by a preventable disability for a life time and who would inevitably have to face and endure the impacts of FASD every day.
The continuity and culmination of this reality was much wider and more diverse than I first imagined, it was not only inclusive to just me or my child, it now was about the multitude of other children and parents that deal with this condemnation of self on a daily basis. The magnitude of recognitions that were staring back at me had taken on a new dimension. Airing my fears, my inner thoughts, my inner turmoil and my personal convictions of this world "my world" could truly be the key to lifting this veil of secrecy. Possibly aiding in the healing process and bring forth some form of inner emotional restoration to all who are impacted by FASD.
I knew that it would inevitably lead to this place of judgment but I had entered the place of no return; I had already chosen to ignore my fear of the judgments that may lie ahead. The judgments; the harsh reality of this world we live in, the misconception that comes from those with the inability to understand or accept the truths and the facts as they are. This virtual societal bubble of unknown ignorance, that seems to be deeply ingrained with this inability to reach a degree of coalescence to conclude or include this thought or fact as a reality, or in the very least within a literal realm of possibilities.
These judgments and indifferences that stand between mainstream society and those impacted by FASD; who without choice have to accept this as their state of being. Hiding these truths from the world was my own ignorance and my own denial to the truth of its existents. I had the comprehension that it was without doubt "my turbulent life and my fragility" that had instilled this fear of hiding all my woes from the world; however it still remained a hidden world. With this comprehensive dissection, I knew instantly that in hiding my vulnerabilities I was enabling this preventable disability to maintain its secrecy.
I knew realistically that I really had nothing to fear, I had already conquered almost two decades of this unbalanced world; what could anyone do or say to me that I had not already had to face daily? I knew that in my own quirky descriptively speaking terms that by sharing my experienced truths it would be like receiving an internal inoculation, it held the power to set me free from my own emotionally based convictions and misconceptions. In this moment I had taken control, I felt protected and my fears were now placed in quarantine.
I was completely focused on the destination that I knew could and would be advantageous to many who have felt the same conviction and loneliness that I have faced. This was the moment I had been waiting for; in this moment I felt I could finally exhale and face all my fears, all my guilt and all my rage. This deep feeling of exoneration swelled up inside and I no longer focused on the thoroughly bruised ego that had controlled me for so long. This moment that had indeed brought me to the place of acceptance, I had finally achieved the balance needed to stop this destructive conviction. Being the parent to a child diagnosed with this permanent preventable disability put me in a position of truly grasping the severity of choice and a deep understanding of the true drastic ramifications ones choice to consume alcohol during pregnancy can cause.
Fetal Alcohol Spectrum Disorder (FASD) is not a singular diagnoses, it is only the grand particulate, with FASD, comes sensory processing disorders, adaptive functioning disorders, cognitive disorders, anxiety disorders, mental health instabilities and an ever present constant stream of health issues. The list of co-morbid disorders or secondary disabilities that accompany this diagnosis is mind boggling to say the least. Kudos to all the Parents who have children with this diagnosis, you have had to become your child's, Doctor, Psychiatrist and Teacher. You have quite literally been the external brain to a child whose filing cabinet "brain" has no order, and who feels completely misunderstood and unbelievably scared.
So who am I? I am the Mom to a quirky child who makes me laugh, who has taught me more than I could ever imagine, has given me a life of depth, heart and immense joy. My child has given me the strength that I never knew existed, has led me down the path I didn't think I would ever walk and at some points has made me feel completely crazy and out of control.
The first second and third person of me was the prerequisite to parenting my child with multiple disabilities. I had to compartmentalize, I had to divide myself and I was defiantly required to become who I am. Knowledge of irreversible consequences leads to the informative choice of where we want to be, what we want our life to be filled with, taking risks or erring on the side of caution.
Having no choice but to function within the confines of inability, continually facing fear, being misunderstood and unable to conform we have become a family unit; who are unalterably the polar opposites of a parallel population.
We were without warning or choice, impacted by FASD!
