Autism was always such a vague word with such a vague understanding. Misunderstanding. I often feel that so much is misunderstood about Pooka - about her life and her perception of the world in which she lives. I remember reading stories about "mutes" in High School and having a distant questioning of how one could ever be a mute. It was very hard for me to conceptualize this possibility; the possibility of a person not being able to speak. In some stories the muted character was a victim of abuse and made a choice not be speak. In other situations, there was some biological problem but usually the person inflicted in this way could use sign language to communicate, and I personally never viewed a person with the ability to use sign language as a mute. Still, there was something eccentric about this concept of being a mute. I could not understand how a person could not be able to speak. I had never known a person that was mute.
Having autism come into my child's life and subsequently into my life, I was introduced to this phenomenon of muteness. Pooka had developed the beginnings of language and was advancing according to all the milestone charts available. She was cheerful and eager to learn new things. After vaccination, when her behavior changed, she was no longer cheerful and when her eagerness transformed into fixations, she also became muted. She no longer spoke. I was now face to face with this mysterious phenomenon - this concept which always left me perplexed. I was the mother of a mute. My beautiful, cheerful little girl lost her ability to speak.
What once was, will be again...
It seemed as if it is that simple. What once was, will be again... Something within me felt an even stronger force, that if it was, then it shall be again. This was not something that seemed absurd or mysterious. This seemed like common sense, logic even...If Pooka has the ability to speak, how in the world could that be lost, forever?
Immediately, I set out on a mission to have Pooka get her ability to speak back. What once was, will be again. At two years old, it should be a piece of cake. Kids pick up everything. They learn with so much fierceness and they never forget. After assembling Pooka's team and having the program overseen by a local university, I realized, after days turned into months and months turned into years and years turned into more years, that what once was will not always be. My understanding of this disability and re-ability was not common sense at all. I stepped into attempting to solve an extremely complex equation, the human brain. I realized that the brain was a much larger puzzle to be solved and so little information was available. In a broader sense, there is so little known about the human body, period. There is so little known and so much to be solved from degenerative diseases and genetics to neurological disorders and autism.
I began to view Pooka, not as Pooka but as this project. She was no longer a child, she became something else. Something that needed to be fixed. She could never be alone and her fixations needed to be redirected at once if there was any chance for her to recover from this, this thing that overtook her mind. Being focused on Pooka's disability caused me to lose focus on the person, the spirit being that existed within Pooka. Since the focus was on full recovery, the small triumphs were were not significant enough. Every day that passed meant that Pooka was another day older and with each passing day, somedays with minimal or very little progress, I looked at it as another day lost. Another day that Pooka would be that much farther away from full recovery. I remember when Pooka's fifth birthday was approaching and how disappointed I was with her progress. I remember feeling lost and desolate, not knowing when and if we would ever see the light at the end of the tunnel. I remember weeping the day before her fifth birthday and questioning the universe, asking for understanding and direction. I also asked for forgiveness and resilience. I asked for triumph.
******************************************************************************************************************
I didn't know when or where or how progress would come. I really felt that this was my darkest hour. Watching Pooka grow up and realizing that in a very real way I was completely helpless in creating a support system that could permanently turn her situation around. I felt defeated but hoped that with effort, eventually, there would be victory.
© Heather Berg 2016
