How Autism Changed ME: What Do You Do For Yourself?

Tuesday, December 3, 2013

What Do You Do For Yourself?

     Sometimes it seems as if there is never a spare moment in day to day life. I mean there are messes to clean up, meals to make, laundry to fold and all the other stuff that comes with being a responsible and conscientious mother. Having an Autistic child just quadruples the effort to maintain a stable environment for the family as a whole. And as much as I like to stay busy there are other aspects of my life that I really need to keep track of. For instance, it is important for me to know how I am feeling about my situation. It is important that I don't become an autometron, just going through the motions of a difficult existence.
    There was a decade of my life when I did everything right. I pretended that I could make my family normal by becoming extra involved in school volunteerism and by cooking time consuming meals and by not wearing tank tops in public. I even attended a local church in hopes of becoming part of my community. Still, I believe, at this time, I was never so unhappy. By becoming involved in "normal" activities I had the hopes of fitting into the perfect mold of contentment like everyone around me. But really nothing changed except for added dissapointment on top of living with a severe Autistic son. Much later I discovered why I was an outsider and it wasn't because of Tanner.
    I wasn't being true to myself. I was taking my life to seriously. I wasn't enjoying the disaster which was my life. First of all, I had a big talk with myself and stopped all that "appearances" crap. Next, I started watching my crazy boy in a whole new way. I found that his "abby-normal" brain makes him a very interesting and funny person. I let go of my control, I stopped telling him no, I stopped covering his mouth when he got to loud. I just let it roll. When he threw his food, broke something, put his head through a wall, I stopped reacting. Afterall, these are just material things which can be fixed at leisure.
   And Most Importantly....the boy WILL fall asleep by 8:00 pm which leaves me MY TIME to do what I please. This part of the evening is crucial to my well being. I plan my alone time like I plan a vacation ie. it does not go wrong. First I make sure the children are put away and can't bother me, then I lock my bedroom door.
    What happens next is purely magical. I put on soft yoga music, light about twenty candles, draw a hot bath with lavender scented bubbles and soak until I am ready. Then I talk to myself. I ask about my day and how I am feeling and I congratulate myself for making it through. Then I think about all the good things in life which make me smile. Then I think about a single thing which I want to do better next time. Finally I try to blank out all thought and I ask with my thoughts "What is your will?", "Please help me!". I try to communicate with the presence I feel, the presence I talk to when I use my inner voice. Next I feel peaceful..... This is my indulgence, the thing I do for myself. This is what saves me from myself.

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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.