How Autism Changed ME: A Long Process

Tuesday, October 8, 2013

A Long Process

I wouldn't be writing unless I was comfortable in my own skin. It has only taken 46 years to be able to be confident and unapologetic about the way I live my life and the way I take care of my crazy child.And then to have the audacity to engrave my thoughts forever into written form. This process has been a long one. I'm not saying that I have reached enlightenment or anything but I don't expect things anymore. I don't control situations anymore. I don't control my son anymore.And the reason? Autism cannot be controlled. I just recently accepted this jewel of knowledge. My autistic kid is nutty and funny and I love him but he doesn't fit into a normal life. My life has to fit around him. Resentment and disappointment have long been abandoned yet I held onto control as if a happy life depended on it. Well, the more control I tried to exert over my boy's day to day life, the more crazy I became. Now I have decided to look back on the dumb and futile things I have done to make life normal. Learning from experience and giving up on control have lead me to contentment. I don't know what I would do without autism. I would be an empty vessel. Thank you Tanner for being such a bitter pill and yet the love of my life.

No comments:

Post a Comment

In The Beginning

Once upon a time I was timid and indecisive. Once upon a time I was needy and insecure. This luxury started to change when I had my first baby, my abnormal baby. He was a perfectly wonderful baby to me. He nursed well, he got fat and smiled and played. Except he was to relaxed and content. He didn't move much, didn't hold his head steady and didn't make much noise; true dream for a new mom. I remember how I held him, how he melted into my arms. He never tried to wriggle out of my grasp. Later, I would watch him miss milestone after milestone. They called him floppy, hypotonic and "a touch dysmorphic". They were worried about my boy's development. So after seeing specialists who provided me with lots of meaningless well rehearsed uncertainty; and thereby receiving absolutely no workable information toward a diagnosis or plan, I left with a twinge of hope but mostly despair. I wouldn't find answers unless I diagnosed him myself. I would research until my hands fell off.

Milestones and Diagnosis

Milestones are those special developmental events which occur when your child starts climbing the ladder to success. Milestones are the"firsts" that moms get so excited about. My boy's first independent steps were at age 5 so you can imagine that even the basic accomplishments were long in coming: sitting unassisted at 10 months, crawling at 2yrs, speaking at....never. During the early years of research and development I got a diagnosis of FG Syndrome, an x-linked chromosomal condition. My son fits most of the physical and mental characteristics but can't be tested definitively because this syndrome hasn't been mapped yet. At the time I clung to this diagnosis because there was such a wonderful support group who could answer my questions. By the time he was 6 years old I was getting the raised eyebrows of specialists when I mentioned FG Syndrome because of their unfamiliarity with it. Later I became content with the diagnosis of AUTISM with a possible unknown genetic component which accounts for his "look". ie. small chin, prominent forehead, downward sloping eyes, hypotonia.

Fifteen Years Later

I have lived with a low functioning autistic child forever it seems. I have seen my boy grow from an infant to a 120 lb teen. I have changed from being a passive soul to being a strong soul. Before autism I was directionless, after autism I have lived every single day with profound purpose and significance.He has been such a joy to me and such a frustration. There were years of astonishingly violent tantrums accompanied with moments of joyous affection. I learned to accept help. I learned to be patient.Most of all I have experienced the incredible gift of unconditional love. I am living a full existence by giving up. I have given up trying to be the perfect mom. I have given up trying to control my life and his life. We are out of control but we don't care.