Saturday, April 5, 2014

The other eleven months...

~"There are things known and there are things unknown, and in between are the doors of perception"~Aldous Huxley

 I'm kind of hiding from social media at the moment...well, really-for the month. The "awareness" stuff is starting to tap dance on my last nerve...almost to the point that if I see another "1 in 68"meme..or "looking through the world through his/her eyes blah blah blah" thing I'm gonna explode.  Really, a big messy pile of blood, guts, coffee and chocolate all over the place.  So, it's better that I lay low. I admit, I am jaded..which is part of the reason I'm staying away. I remember what it was like when I first started blogging five plus years ago-more importantly-I remember what I was like.  So, I try and cut some slack. Everyone's journey is their own-it isn't my place to question or criticize them.  I wish them safe travels. 

  The thing of it is... I'm frustrated! Every April, I see the same thing.  Lets all be aware! Honestly, how much more awareness do we need? What does awareness mean or even do anyway? How does it HELP individuals with autism?  Does it help FAMILIES who are struggling with aggressive behaviors? Does it bring more funding to schools? Job training? Does it help to EDUCATE other people (honestly) about autism?  Does it stop a child from wandering? Does it help me figure out what I am going to do if one of my kids can not live a fully independent life? Yeah, that's a big worry. I have to die one day. I'm scared.  What happens to that child when I die? I'm all too aware of the lack of resources, supports and services. In fact-I'm just as aware as I was last April...and May and June.. After April, where does everyone else's awareness go? I almost want to break into a folksy parody.."where has all the awareness gone..long time passing..." Is the world only aware of autistic people in April? Where do they go the other eleven months? 

  A few years back, I had the kids out trick or treating for Halloween.  At one of the houses, the gentleman giving out candy was in a wheelchair. Oscar-being the social boy that he is..loudly exclaimed "Hey-nice wheelchair!" There were many gasps! I mean, my boy actually commented on someones wheelchair. Oh the humanity! The thing of it is-he meant the compliment. He saw nothing wrong with commenting on what was certainly a part of the gentleman's life.  He ACKNOWLEDGED that man...disability and all.  He didn't talk around him..pretend that the wheelchair wasn't there. He acknowledged him-as a person.  *sigh* We are so ingrained to pretend not to notice...or even GASP!  ADMIT that we see anything different than the norm. Oh we talk a good talk..pretend that we are all AWARE-but really-are we? It seems that we simply aren't allowed to acknowledge our discuss ask questions. Instead, we hide behind ribbons and puzzle pieces and blue light bulbs..and (for gods sake!)  even chocolate bunnies! (seriously-there is a brand of chocolate bunny with the puzzle piece on it!)  Maybe it makes people feel as if they are doing something...I don't know. It just feels superficial to me. 

No, I'm not suggesting that we all immediately go out and start interrogating anyone in a wheelchair, or someone of a different skin tone, or sexual identity etc. etc..but maybe I am- just a little. Maybe it is time to openly recognize and discuss differences..recognize and discuss disabilities. Recognize and ACKNOWLEDGE that underneath all the labels-we are all just human beings. Maybe even come up with some solutions? Awareness without acknowledgement is just a word.  

  So, I'm going to lay low for the rest of the month. Stay out of the fray..and just keep on doing what we have always done. Raise my kids.  Who-will be taking over most blogging duties here until May.  my next post will be from my ten year old.  It should be interesting. 


Floortime Lite Mama said...

I am totally there with you!!!
How much more awareness do we really need!

jazzygal said...

I really do understand where you are coming from. I also understand the need to make others aware and to hopefully accept (tall order.)

I'm not getting involved much myself this year either. Anything I have shared is to highlight the lack of supports. Both for newly diagnosed AND those who have 'made it' in to the big bad world of mainstream and find themselves without any services.

I think both your boys would teach everyone a thing or two! xx

Looking for Blue Sky said...

I haven't got a lot of time for blue light bulbs either *sigh*, and I suspect most of the people who see autism awareness stuff are mostly already quite well aware of autism, thank you very much. I also believe that there are still people out there who know very little or nothing about autism, but I don't think that blue light bulbs will enlighten them very much!

Looking forward to reading what your 10 year old has to say xx

kathleen said...


@Jazzy-same here...I think that all of our kids are lovely examples of how kids develop, change and their own pace and time-it's positive. We so need more positive!

@bluesky-yeah, I'm confused over the light bulbs as well...What exactly are they going to tell a person who has no idea about autism? It's confusing..