How Autism Changed ME: The Newest Invention

Saturday, March 22, 2014

The Newest Invention

     You may recall how I have been struggling to keep my skin on my bones. It"s not that I have a cannibal in the house, it's just that I live with a kid who can rake my face like Freddie Krueger in "Nightmare on Elm Street". After the dart gun suggestion failed, me and a buddy came up with a humane solution to help protect me from the cub when he is at his worst.
     What I needed was a barrier between me and my sweet, little savage. After much talk we came up with a brilliant plan. Why not make a shield, a barrier of sorts, that I can put between me and the boy as I try to direct him to his room. It would have to be equipped with handles, it would have to be light in weight, it would have to have an unbreakable surface. As I figured the dimensions my buddy talked about the materials needed to make a portable, uncomplicated barrier which can be easily accessible in times of crisis. I suggested clear plexi-glass, he suggested a a welded metal frame with handles for strength, stablility and maneuverability. The result was a brilliant hand made shield weighing in at 12 lbs. 30inX30in with foam on the edges, taped down by duct tape. It is a thing of beauty!
    And it works! The other day I was able to remain almost unscathed after Tanner flipped out unexpectantly. Not to say that I have things totally under control (there is a huge learning curve regarding this new device). Still, I avoided some face shots but fell victim to a couple of injuries due to inadequate counter measures. I will learn!..... If the shield is ineffective then the next step may be....cannabis?

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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.