Designed Chaos

     Throughout our autism journey we've heard several times from kind people, "God gave you your daughter because you are strong or you can handle it or you are special or He trusts you."  I recognize the virtue and support of these comments and being a person of Faith I agree in God's plan and purposes. However, it very well may be the fact that our daughter has autism because of my husband and me.  I don't say this in a guilt stricken or self deprecating way.  Autism probably has a genetic component and we are all combinations of the genes from our parents for better or worse.  Having children is a game of chance with abnormalities being a real possibility.  In the future we may be able to manipulate the genes or "fix" some of these things, but at least for autism this isn't available right now.

     There also may be environmental factors involved with autism. Did I do something while I was pregnant to cause this?  Did I get sick with a virus?  Did I breathe in too many chemicals at work? Is there too much pollution in the air where I live?  Did the preservatives and toxins in my food cause this?  Did her pre-term birth at 35 weeks have something to do with it?  Maybe.  There are many areas of research going on right now pointing to different possibilities.   http://www.autismspeaks.org/science

          I'm not sure that God made my daughter autistic.  I do think that he allows the disorder, chaos, randomness, pains, hardships, and trials of life to teach us and refine us.  These things help us to look outside ourselves for help and understanding and to be grateful for the good things in life. I wasn't expecting to have a child with developmental problems nor can I say that we were initially well equipped to handle it.  Some of the behaviors surrounding autism are a struggle for her and us.  There are times when my own weaknesses and ignorance are probably a setback for my daughter.  But we're learning; she's learning.  Autism has given us a new perspective.  We are different, better people as a result.

     So to God I say, "Thank you.  Thank you for the opportunities for growth and expansion.  Thank you for our daughter.  Bless her with peace and happiness.  Grant us the insight & education to help her.  Make us fit for the job.  Enlarge our hearts.  Increase our patience.  Strengthen us.  Lead us."

Can't you see me?

     There's a touching scene in a movie called The Other Sister that I watched before I had kids.  That scene is recalled to my mind often now as I try to balance teaching my children what I think they need vs. trying to preserve their own individuality and independence.  This is especially true with my daughter MG.  In the movie, Carla, a daughter with some unspecified mental and social "handicaps" confronts her mother about seeing her for who she is and basically accepting her and what she wants.  It was very moving and thought provoking.  She yells at her mother (at her sister's reception), "I'm just me, Mom!  Can't you see me?  You never look at me!"

    Sometimes I wonder if while doing all of the many things for my daughter to help her get along in this world, if I'm really seeing who she is?  I often frustrate her with my requests to do things that are "normal" or "socially acceptable" which she would care not to do or doesn't think about.  Please don't talk with your mouth full of food.  Please wipe your hands on a napkin.  Please lower your voice.  Please put on a clean pair of pants.  Please sit still.  Please don't use that tone of voice.  Please stop asking so many questions.  Please don't interrupt. Please pay attention.  Please give those people some space.  Please don't talk to strangers.  Please keep those thoughts to yourself, and on and on and on.  Do I see her or do I see the food stuck in her teeth?  Do I see her or do I see the smudges on her clothes? Do I see her or do I see the unkempt hair?  Do I see her or do I see the missing sock?  Do I see her or do I see the person I want her to be?

     In MG's diagnostic report from the psychologist there is a section with recommendations.  One of these says, 

"MG is likely to benefit from hearing, on average, 8 praise statements for each reprimand she hears. The general recommendation for typically-developing children is 4 praise statements for every single negative statement about their behavior.  To account for the number of negative statements children with learning disabilities hear, it is desirable for adults in positions of authority to make every effort to increase the number of positive statements beyond the number from which typically-developing children are likely to benefit."

When I read that, I realized that I had a whole lot of praising to catch up on and I still do.  Sometimes in my over-zealous attempts to correct my daughter,  I actually might be overlooking her heart and soul.  The words of one of my religious leaders serve as a prudent reminder for me:  "Never let a problem to be solved become more important than a person to be loved." (President Thomas S. Monson, Finding Joy in the Journey, Oct. 2008)