August 17, 2010

My Journey Through Autism

For the past 3 years, I have been struggling to find meaning through my children's diagnosis.  I have searched for answers and created new questions.

Through all the advice and resources I have gathered there was nothing to really answer the question why.  Vaccines, genetics, diet, supplements, cosmic destiny, I've researched all of it and nothing made me feel like I had a real answer to my children's condition or what my role as their parent should be.

So I pushed it all aside to take solace in being a resource for others.  This experience has been fulfilling and selfish as well.  Other's experiences have been a mirror for my own.  The emotions I have experienced, the fear and even the joys have helped me come to my own value system.  Which of course could change in month or a year from now.  I have never really accepted my children.  I wanted to cure them, change them,"typicalize" them, but it wasn't really for them, it was for me.  It was to improve my standard of living. Some things worked, some things were broken, some things made sense and a lot didn't. 

I pride myself on being able to take responsibility for my thoughts and actions, but admitting this simple fact has been the hardest to do.

Our lives are journeys, they won't be like anyone else's.  My experience, although very similar to many of you who read this, will still be very different from yours.  I am happy to express that acceptance.  For me it is the only way to deal with the challenges and questions, my family faces day to day.  

Summer's are traditionally hard, because it means I have to spend more time with my kids with less resources available. I know that sounds horrible, but during the summer, I really see them for who they are. Don't get me wrong, I love my children and our experience on this journey of life is very personal.  Sometimes looking at the truth of the situation can be overwhelming. I am not a banner mother, I get tired, angry and sad about the things my kids can't do. During the summer those things somehow become more evident.

During the summer, the behaviors increase, the regressions start and many times I feel more isolated and exhausted.  This summer was different. The level of services and ESY were the same, but I was different.  For the first time since the last one was diagnosed, I am not trying to find any special meaning in why my family is the way it is.  I don't really even care anymore.  These are my babies and I love them for who they are.  

The big plus, which I think made the difference for me is that I know longer care if anyone else accepts them as well.  That means if kids at the playground run in terror -- that is their problem. If adults stare at the super duper meltdowns -- its probably because they don't understand, and I don't care if they do. I just decided not to be angry anymore or to make excuses for my children's disability. 

I will always stand up for information about bio-medical and alternative treatments. Parent's need to know they have other options besides, medication and education. I will always stand up for the rights of people with disabilities to be included in society. I can't help but do that.

It is necessary for me to have balance in my interactions and participation with the overall "autism community."  I had once written that autism is my life.  That I ate, slept and breathed autism.  What kind of life is that?  Even for my children, do they want to be defined by a one dimensional label?  If they could communicate it, I think not.  It would take away from my oldest independent spirit, my middle one's curiosity and my youngest glowing empathy.  They are more than a diagnosis and finally I am more than just a mother with 3 kids with autism.

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