Friday, February 1, 2013

Don't Let Advocacy Label Your Child or You

We as parents never ever questioned our ability to raise our children until the day we heard the word "autism." Unsure of what to do we reached out into the vastness of the Internet to research, explore and discover answers to the new unknowns in our child's life. But we forgot one important thing: WE as the parent still know best how to raise our children. The decisions and actions we take come from that one place that no one else has...our souls and that gives us the strength of a thousand Samsons.

You know what too..Quite frankly it is also no more anyone elses' business how we chose to raise our children because they are autistic then if they were neurotypical. I do not know why so many parents forget that. Why are parents so afraid? I don't remember being that afraid when CM1 was first diagnosed and I am definitely not afraid now. I remember sitting in the doctor's office hearing the word autism and vowing that my son was going to have a life. No one was gong to tell me he can't and no one was going to take his future from him. I also didn't think I had to ask an autistic person for permission on how to raise my child and I still don't. I didn't think I had to abide by the unwritten rules of any national autism advocacy organization to raise my child and I still don't.

Today's world is a rather odd as compared to when I began in the world of autism. I have never come across so many people who are so easily offended simply because you disagree with them or think so much of themselves that they are the only one true voice of a cause. Well, yes I have, but whatever that cause was it didn't have such a direct effect on my children's future, so it didn't really matter all that much in the first place.

Now for the record:  if a self-advocate explains to you how it feels when you yell at someone with auditory processing disorder, it does not mean they then get to tell you how to run your child's life. If you think that some accommodations are necessary it doesn't necessarily follow that you think the entirely of humanity has to change to suit some little effect of your child's life. If you think it might be a good idea to pace out a vaccine schedule, it doesn't mean you are a vaccine-truther. If you walk for Autism Speaks it doesn't mean that you are only interested in finding a "cure" for autism and ignore that self-advocates have a right to a say in their own future. If you believe that self-advocates have a right to define their own future, it doesn't mean that you think that finding a "cure" for autism is genocide. If you decide to advocate against the use of the "Rword" it doesn't mean that some autism advocate can tell you what words are and are not politically correct. I have never met so many people with such low self-esteem that they need to denigrate others who are fighting for the same cause in order to make themselves feel important or believe that their way is the right way. How does anyone think they are ever going to get anything done, ever?

Personally I don't know what happened in the last two decades while my boys were growing up. I used to think that all this talk about autism and the advent of all these groups was a good thing for our children. Now I am not so sure. While advocacy is always good, it becomes most difficult when those that are supposed to be the most helpful stand in your way. When those that are supposed to be the most helpful demand one standard definition and one standard ideal. No one can define another human being and no advocate on any level, no matter who they are has the right to tell the world, who my boys are. That is a right they reserve for themselves and themselves alone. I didn't defy  doctors and teachers for the past twenty years to hand over my boys' right of self-determination to anyone but themselves.

Choices are not all or nothing. Life is like the old style Chinese menu. You can pick some from column A and some from column B. Sometimes you get a choice of soup and other times eggroll. But in the end just maybe you get a great fortune in your cookie. We pick and choose and grow and discover what works and what doesn't. We learn. We explore. We try new things. We become adventurous. For a successful life and successful advocacy you cannot stick to one theme or idea. You need to incorporate everything into your worldview and see how it applies to yours.

So I decided...I listen to myself, and the hubby, about how to push the boys and where to push them. We look at the world as it is and say how to we get them to XYZ and at the same time, make sure that we can change the world ever so slightly. Life is not an all or nothing game. Life is game-plan A, then  B, C, and sometimes all the way to Z.  But that's the real world.  That's all you need to know as a parent of an autistic child.

Now go be secure in your parenting.....remember it comes from your soul and no one elses.

Elise