How Autism Changed ME: Don't Change Your Kid

Friday, October 11, 2013

Don't Change Your Kid

    Autism didn't just sneak up on me, I could see it coming for miles. Eventually it is just a matter of acceptance. From the very beginning there was something not quite right. My baby was missing the train. I waved bye-bye to each of his milestones. By his four month check-up the pediatrician dropped the "developmental delay" word on me and a "let's wait and see" piece of candy which only fed my denial.. So I waited and didn't see. I remember placating myself with sayings like, "he is just a lazy baby, he'll catch up". At his six month check-up my world blew apart, all those new words and specialists and tests and appointments. Neurology told me my boy had neurological issues. Duh. Gastroenterology told me my boy didn't have the muscle tone to push his poop out which explained his constipation issues. Thanks.Genetics said that his chromosome test was normal. Great. Orthopedics gave me the word "hypotonic" or low muscle tone. Right. Next would come the therapies; Physical Therapy, Occupational Therapy, Speech Therapy, Head Start.
    Everybody wanted Tanner to get better and better at things he couldn't do.All these exercises and therapy sessions were just things to keep me busy and hopeful. Looking back, none of these "extras" did a thing for my son's development. He was keeping track of his progress with his own developmental clock. When he was strong enough, he rolled over ( 5 months), when the time was right for him he sat on his own, (10 months). When the stars were aligned in his world he crawled (24 months). When his body was ready he walked, (5 years old). Recently, after years of building muscle strength and coordination he decided it was time to run (awkwardly) and jump (straight up and straight down). He is 15 years old.
    At first I tried to make my boy become normal.I tried to change his destiny through manipulating his natural ability. Looking back I should have enjoyed every moment of his development without the expectations that Therapy forced upon me. I should have let the progress happen naturally and enjoyed my little pup at the stage he was in at the moment.
    So I did the mostest when I could have done the leastest (not my only crime in this journey).The point is that I can't change my son's development or his autism. If I try to speed things up or slow things down then I am the one that loses. Alpha moms don't like to lose.

***note: behavior is something else entirely***

NEXT UP: Don't Pretend

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.