Most people where I live, if they know our name, (which they probably do because of our business in town) know which house is ours. If/when starting April 1st they see our house “lit up” blue and curiosity beckons them in the direction of google, they will see that it is for autism awareness. They may learn something about autism while they are on the internet and if in the future they come across my kids in our town which is a whole whopping 1 square mile (chances are it will probably happen at some point) maybe they will know a little more about them.
I know a lot of people have an issue with the color of
autism awareness being blue. I know it is blue because when autism was first
becoming well known there were far more males being diagnosed than females
so….blue….it made sense at the time. I’m sure the intent was not to exclude
girls from awareness.
It’s true there are a lot more females being diagnosed now.
My daughter is one of them. I have one of each! To partially quote Jim Carrey
from “Liar Liar”, “The goddamn [color] is blue!” and that is what people
associate with autism awareness, so that is the color I’m putting on my house.
If I’m going to light the outside of my house a different color for an entire
month, I’d like it to be pretty obvious why.
Aaron and Rachel are collectively one of a kind where I live. They are non-verbal siblings. If there are any others like them here I have not been made aware.
I could spend my time trying to explain a multi-colored
light (which yes, would also make sense but I would still have to explain) or advocate for another color, but I
would rather spend the time spreading autism awareness to my teeny tiny town about my 2 non-verbal autistic
children. That way should God forbid one of them ever need help, maybe there
will be a greater chance of them getting help because everyone knows who they
are and that they have autism and can’t verbalize their needs. Our town is
bordered on 2 sides by a large, fast flowing river. Our house sits on said
river. We have measures in place at home to prevent this from happening, but should one of them ever wander off I want to know that the community at
large will help us out and know what an extreme emergency it will be.
I could also spend time shouting acceptance vs. awareness
from the rooftops. In my experience, in order to accept something, one
usually wants to have a good understanding or awareness of what they are
accepting. I'm not saying that's the way I am personally, but that’s just the way most human beings are unfortunately. At this point I
want to spread awareness. The people here in my town who know them already accept my
children for who they are. I want people to understand them better. Most
people’s understanding of autism is very skewed. “Oh your kids have autism?
What are their special gifts?”
You know, Aaron and Rachel probably have special gifts. Who
knows? They're both very smart. Since neither of them can speak functional English though, and Aaron has such severe
sensory issues he’ll kick your ass if you get anywhere near his ears like
Warren from “There’s Something About Mary” I want people to be aware of those
parts of autism for the sake of my kids. Not to say that my kids don’t potentially
have high I.Q.’s or some special talent that we have yet to discover. They
probably do and those things are great. My I.Q. is 135 which affords me the
intelligence to know that the people around my children need to know all sides
of autism because we live in such a small community. I guess I’m just selfish
like that.
So, if anyone in the autism community takes issue with my
house being “lit up” blue (nothing to do with A.S. although I am neutral on
that subject) I’m sorry you are offended or don’t like blue or whatever but as
the old saying goes, “If you don’t have anything nice to say……”
I am a defensive person and I’m also Italian. It is in my
DNA to argue and fight about stuff although I usually reserve it for defending
my family or myself. Especially when my intent is to protect and educate others
about my family and that is what I am attempting to do here.
As you can see I am getting defensive and nothing has even
happened! There is a lot of infighting in the autism community and I think it
is tragic. We could be spending our energy on so much more to help children and
adults on the spectrum but some people just want to argue. Not everyone, but
some. The ones that argue the most seem to have the loudest voices sometimes
and I take great issue with that. They will come in and hijack any productive
discussion and it always leads to nowhere.
Yes, even with the last paragraph I will get defensive and I
think about all possible comebacks. “If you have a complaint you have to be
prepared to have a solution or you can’t complain.” I am currently
corresponding back and forth (with him directly) with Senator Barrasso from my
state of Wyoming to try to have some autism coverage written in to any changes
made to the health care law should Congress be able to get anything passed….ever.
I have even asked to go speak before Congress. We shall see. I know I’m not
bitching about insurance right now but I’m being proactive about something that
plagues almost all of us in the autism community.
Thanks to everyone who reads my blog, loves my precious kids
and puts up with my eccentricities.
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