Tuesday, November 2, 2010

Autism's Sole Criteria: Human

Participating in the 24 hour Communicate to Educate event from The Coffee Klatch  (link on the sidebar) was a very exciting experience. We had almost 75 guest moderators who shared their lives, experiences and insights with all of us. Our reach was global and our participants from all corners of the world. It only proved the point that autism is one of the truly nondiscriminatory things that can happen to a person. It doesn’t care what your skin color is. It doesn’t care what religion you are or if you even have a religion. It doesn’t care what country you come from or your ethnic background. It doesn’t care how you vote, or if you can even vote. It doesn’t care how rich or poor you are. The only thing that autism cares about is the fact that you, your children or someone you love is human. That is its only criteria for bringing itself into your life and the life of your family.

Because autism, itself, is universal, I found that the issues that surround autism are universal as well. Parents constantly try to figure out just what they did wrong, how did they cause this to happen to their children? What is it about the pregnancy or perhaps parental age that triggered this genetic predisposition? What could I have done differently? Why am I so sad? Am I selfish to be angry? Am I a horrible parent to not want this for my child and am I one of those parents who  needs a perfect child? Is it mostly about the child or am I so angry because of how autism changed my life so much?

Then we moved on to questions of care and support. What can I do when they are little? How important is early intervention? How many therapies should they get? Which are the best ones and how do they work? Can someone tell me about medications, they frighten me? How do I know which ones are the right ones for my child or for me? What do I do with the diets and supplements? How important is the proper supports to their success? Did the fact that I missed this disability and they didn’t get early intervention doom their future?

Then there are the typical school questions. What kind of school should they go to? Is mainstream better or self-contained? How do I make sure that they are safe in school? How do I make sure that the school understands how smart they are? How do I make the school realize that autistic children are not like NT in behavior? How can I stop them from applying a zero-tolerance policy to children who don’t get the social nuances? How do I get them to understand my child’s sensory issues? How do I get them to take the social deficits seriously? How do I get the school to realize that aspergers is autism? When do I need to hire a lawyer and sue? How do I get the school to protect my child from bullies? How do I make those charged with my child’s welfare to care and watch over him/her for those crucial 8-9 hours everyday?

  Then of course, there are the interactive family questions. How do I keep my marriage? How do I keep related to my other children? How do I keep related to myself? How do I not loose myself while I try to save my child? How do I make family members understand that this is not a phase and my child is not spoiled? How do I get family members to read a damn book on the subject before giving advice about something they know nothing about? How do I get out of Sunday dinner at grandma’s house because my child will only have a meltdown and it will be miserable for everyone? How do I explain to my parents that Christmas morning is no longer Christmas morning without taking from my parents their dreams too? How do I get grandma and grandpa to understand that my child loves them even if they don’t like being hugged and kissed? How do I remind myself that because my child can’t say I love you, that there is a lot of love inside my child? How do I remind people that it is MY LOVE for MY CHILD that will propel me forward forever?

Well we chatted and tweeted and helped each other. When we couldn’t find an answer we tweeted a HUG because sometimes that is all we can offer each other. One other thing I also learned over the last 24 hours, if I wasn’t sure of it before, is that sometimes, there are no answers. Sometimes you really need to fly by the seat of your pants. Think out of the box and discover for ourselves the answer(s) for our children. Someday the world may find the answers for these universal questions. But until that time it is important to remember to keep asking the right questions. For without these questions we will never know the answers.

Until next time,