How Autism Changed ME: A Few Of My Favorite Things

Monday, December 9, 2013

A Few Of My Favorite Things

     I will be shallow here and make it known what is really important to me. #1 becoming warm when I am cold, ie. (hot bath, warm blanket, fireplace, soup)...#2 becoming cool when I am hot, ie. (cold drink, air conditining, cool sheets, snow cone)...#3 scratching an itch ie. (preferably a human scratcher)....#4 a good book, ie.(wow! that is sooo true and penned sooo beautifully)....#5 a clean car, ie (this car looks so good on me!). If I am comfortable then I am more apt to be grateful. So when these initial needs are met then I can go on and notice the other great stuff in my life.
    The single thing which has saved me from self pity and martyrdom is the gift of having a paying job. I have a skill other than being the awesome mom of an Autistic son. My occupation has empowered me enough that I have never become resentful towards the constant demands and sacrifices I make caring for my cub. Working away from home and being at the top of my game has instilled confidence and importance in who I am. And as a bonus, dad is a very involved and integral part of the family. Together, we have it covered.
    The other thing which has saved me from heartache and despair is that I have a son who is truly clueless. Yes, I am grateful that my boy is on the severe end of the Autistic Spectrum. He will be a perpetual, carefree two year old for the rest of his life, his needs will be met and he will never have the awareness that he is different. When I look into his eyes there will be an innocent child unconcerned about his lost potential. This boy will never know cruelty or disappointment or shame. For this I am grateful.
    Another thing which has saved me from feeling hopeless and overwhelmed is my teenage daughter. She was born into quite a pickle. From her earliest days she has endured the craziness of her brother. But the thing is, she never let him win. She never lost herself. I guess my daughter could have become a compulsive caretaker, hingeing on Tanner's every need, or she could have become bitter, hating her brother and her life as his sibling. Instead, she is a typical sister, sometimes a bully, other times a helper. But she is always a protector and I rely on her greatly.
    There are so many other things which make my life so full. Alot of these things hurt. The things which hurt the most are those which end up being the most beneficial for the growth of my soul. When I feel like I am doing difficult things I feel more fullfilled. Still, I would be lying if I gave the impression that my life is just one Zen moment after another. I experience the whole gamut of emotions in a single day. Some days I don't even want to wake up, some days I am so full of resentment that I just want to disappear. Most days I am content. The best days are when I am filled with a love so intense that I can't help but squeeze the kids until they can't stand it anymore. I am grateful for the best days the most.

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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.