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Saturday, August 6, 2011

Autism: My story as a parent, My gift

The bully in my childhood was a parent. Jump ahead to when I was a parent. I thought myself dammaged goods. I'd look at my son and think, "How in the world could the universe give a child who needed so much to someone who was so incapable?"
 I had an attitude of martyrdom. I stayed awake for days and nights on end and was out of whatever mind I had. I am on the spectrum myself. I cried then stopped crying for years. I shut down and became whatever my children needed. My son was starting fires before age five. He'd excape the house middle of the night. I make the mistake of falling asleep, and he got the locked, and chained door open enough at the bottom that he got out. A neighbor found him sitting in the highway playing. Images of my baby as roadkill horrified me. I knew another autiistic kid who'd gone to an institution where he was abused. My son was at his father's two days on the weekends when I worked the only time I could doing two 16 shour shifts, and those weekends where when I had the most sleep. Otherwise I had only respit care for 2 hours twice a week, so I could go to the grocery store. My life was protecting him. I took pills to keep me awake, pills to make me sleep when I  had to. I was a nutcase.
   My job downsized, the money ran out in a few months that I'd saved and I fell asleep one night. My son started a fire that took our home, and nearly took our lives. I woke to hear my daughter screaming from where she stood in front of a wall of black and red fire, and I could hear my son, emotionally innappropriatly expressing as always, laughing in fear on the other side of the blackness. I know to get low to the floor, I know to run from fire, but that was my child. I ran blind into the flames, and physically ran into him. I grabbed him, and ran toward my daughter's voice, where I grabbed her arm, carried him and pulled her opening the back door and shoving her out, no steps to the ground. I ran with my 80 pound five year old son and my daughter in tow. When we got past the end of the trailor the ac exploded.
   We should, by all laws of nature have died, all of us. I gave up, and I agreed to send him to the institution to save his life and my daughter's as I no longer cared about mine. It was then his father stepped in, and gave my children a home. I had no insurance, so I stayed with a friend then lived in my car a few weeks until I went to stay with my mother. I missed my children so badly, but at their father's there was family who helped taked care of them. Services were available in their state from Easter Seals, Social Services and MHMR that were not available for Autism in my state at the time. My son was also able to start school early there. In short time I realized that my absolute pride at insisting I take care of my children, and unwavering rule that a mother must do this no matter what, they must live with her, nearly killed the children I wanted so much to take care of, and cruelty of all cruelties those children had been watching me die slowy for a very long time.
   As my son began to grow and flourish in his new environment of support, and as my daughter grew to know more peace, and as the time I spent with them was time when we all were better rested and safe, I began to see that the Universe was right. My son was the perfect child for me, and I wasn't given him because he needed me. It was because I needed him. I had been abused for many autistic traits. One of them was when I'd go off in my own world at over stimulation and stare at nothingness.
    My son and I were sitting outside one day, and I saw him staring at a tree. Long past trying to get him into my world and having developed the compassion, curiosity and wonder of getting into his world, I decided to join him and stare too. It was a nice mental break. I found he was watching a trail of ants. It was so, so ,so peaceful. Nothing to do, just being. My son taught me how to meditate in this way. He taught this frantic, desperate mom that stillness is an absolute need for me and all of us. He taught me that play is not negotiable. We die without it. He taught me that social rules like how to act in public or when to sleep are of no importance. He taught me that happiness is what we're here for!
    I started stopping the pats on the back when people would call me a hero, because pedestals are hard for me. They set up expectations that no human can live up to. The hero was my son. In starting that fire, he saved my life. I got off all of the pills. I stopped trying to be superhuman, and I was forced to let him go to grow. He saved all of our lives.
    Since then, he teaches me that we are adequate and the perfect family for eachother all of us. We're still learning, but I am so grateful for the children I have, adults now. smiles. We have all grown up together through this. Now, when I remember those times when I thought of taking my own life, so someone, anyone would help my children, I am still humbled that help came from the last person I'd have expected it from....the five year old son of mine who loved us all enough to end the illusion that I had to try to do it on my own. He says he owes me his life, but no...That's not it. I owe him mine. 17 years have passed since then. Every heartbeat, joy and tear, everything I know about being a mom, all comes from my children.  I have been gifted beyond measure!
   If you think I had courage, step into my children's shoes. Their courage and strength and insistance on joy and peace in life gave me courage enough to go for an evaluation early this year. My children teach me to take care of their Mom.  They give me the courage to live and live life fully every day of it.
   There is hope for all. It's not hope that our children will one day be like us. I'd have been sadistic to hope my children would have been like me,  the nonsleeping, sorrowful, self absorbed, self pitying, martyr of a woman I was back then, not to mention self medicated. What kind of monster would want that for their children?
    No, there is hope that Autism will be seen as a way of being that while challenging can have it's own beauty and peace, that no parent is perfect, that we are not alone, and that we might see that sometimes the answers we look for everywhere else are right in front of us. Take time to be still, ask for help everywhere and accept it no matter where it comes from.
   What sometimes looks like the source of the problem, just may be the light at the end of the tunnel.
tina jones.


  1. Powerful story. It is amazing what we can learn through our children.

  2. Very powerful indeed, Tina... Kudos to you and your children :-)