Friday, April 3, 2015

50 Shades of Blue

Every year most of us autism families gear up for the month of April for the so called "Light it Blue" campaign, in order to let the world know that we are loud and proud of our autistic family members. The blue light bulbs come out, blue puzzle pieces everywhere, from nails to bumper stickers. And if that is your thing, than mazel. But for a lot of us, we are somewhat drowning in the sea of 50 shades of blue. Its not to say that we don't want to promote Autism Awareness and or Acceptance, we do. We just want to do it in our own way.

With Autism being more and more relevant in our society, I understand the need to educate and accept. But I think the trick to it all is learning how to co-exist with people who don't fit into your brand of what normal is. And for us parents and caregivers, it is an ongoing battle to break people of this thought process and the misconceptions of what Autism is. Which is why in the beginning, Autism Speaks started the whole "Light it up Blue" campaign. Which when it started, the concept of it was great. But through the years and the evolution of what this campaign was meant to be, has since lost it's way. Autism Speaks, for the most part, tried in a very corporate way, to get education out there for the general public to understand what Autism is, while losing the humanity of what autism is. In lament terms, its all about making money. Now, don't get me wrong, when we got our first diagnosis, AS was great with the "First 100 Days" binder they sent out. It was a perfect way for newly anointed Autism Parents, to educate themselves for what is going to be coming down the road for both them and their children. It was almost like the map they give when you enter an amusement parks. Y'know the ones that give you a little description of each ride, where the bathrooms are and the food court is.But for me, that was all it was. And the more I learned about what AS was about, the more it seem like a company or a brand name, rather that a source of support. But that is just me.

When I look back through the years since our first diagnosis, I remember what got us through things. What helped and what didn't. The snappy come backs to the ignorant and uneducated remarks. And I will admit that, at first I was all about lighting the house up blue, so blue that smurfs would get jealous over the blueness. And the puzzle pieces, that would make my life look like a walking Ravensburger Puzzle 3D style. As my children grew and new challenges came up, my focus for Awareness and Acceptance  during the month of April changed. People are very aware of my children when we go out into the real world. There is no denying that. There was no amount of blue or puzzle pieces out there, that was going to change how the world viewed my children. My thought was and still is, if you are eager to learn about something, experience it. Sometimes the best way to learn about something, is a hands on approach. I am not saying invite yourself to someone's house to observe what autism is like daily. But if you are curious, most of us, are willing to answer questions, just don't be an asshole about it. There are so many assumptions that people make about autism. They see a glimpse of what it is really like. There are joys and there are pains. And like everyone else, we have our good days and bad. It's in a different sphere and handled differently. Is it a somewhat demanding lifestyle, which not everyone understands, which is why we don't need judgmental assholes in our lives.

When it all comes down to it, there is more to April than just lighting up things blue or scattering puzzle pieces everywhere. If you are one of the few that know a family  with an autistic loved one or someone who has autism, the best thing you can do, is let them know that you accept them, love them and support them. Help them out when they need someone through the tough times. If we truly want the world to see exactly what Autism is, its going to take more that just 50 Shades of Blue and a whole lot of puzzle pieces.

Patience and Education.