Thursday, September 5, 2013

Awareness, a multiplatform word.

I'm sure, by now, many of you have read (or at least heard about) the tragic story of the Stapleton Family. (If not, the story is here:

Her wisdom and compassion were a light for many of us in the Autism community, so it's no surprise that many of us are deeply effected by this shocking story.

No judgements here. When you're pushed to the very edge of your emotional limits, your mind goes to unspeakable places. I'm not saying that I would have done the same, but I am saying I understand why her mind went there.

I worry all the time about my kids. Will Pixie and Monkey be able to live on their own? Be able to take care of themselves? Am I going to be taking care of them for the rest of their lives? These are the kinds of thoughts that keep me up at night. I try not to dwell on it because whatever will be, will be, and worrying about something you can't change does no one any bit of good. My kids need me "in the now" to help them. And that's where I *try* to stay.

It doesn't always work. I can't tell you how many times I've cried in my shower because, out of nowhere, the anxiety and stress hits you like a ton of bricks and you whisper "Can I really handle this?"

Doubt and defeat are powerful cancers on the soul. If gone untreated, it will eat away everything you've tried so hard to put up. It eats the best and strongest, eventually...

Awareness. Ask any Autistic parent and they will give you a list of what that means to them and why it's CRUCIAL for our community. It's growing a community together held by compassion and understanding. It's putting tough questions up to the doctors for an answer (that we many never get.) It's driving home the importance of having early intervention in every district so that the child can have the best possible start in life. It's a simple as leaning over to someone who's staring and saying "She/He can't communicate like you can. It's a learning disability."...and on the rare occurrence, (which is growing smaller much to my relief and fear) the light in their eyes sparkling that they finally understand why your child is flapping their hands in public.

There's another side that even us, as Autistic parents sometimes oversee... Awareness is also linked to the parents that have been fighting too long and need someone to lean on once in a while. We need to be aware of our own community members and the internal struggles we ALL face. Be that shoulder, that ear, let them vent. When someone asks "Hey, you ok?" and we turn, give that knowing smile and say "Sure.", knowing that's the wrong answer and knowing that we want to yell and scream and shout 100 different things (some not so nice) without judgement. We don't need to hear what we should be thankful for. We need someone that just "gets it"...and even if you don't, just being that quiet ear. (Hmm... can you tell I've been there before??)

One of the blogs I've read about this, sums it up perfectly. ( For a community that is divided (Anti vacc vs Vacc, meds vs homeopathy), we have to stop fighting. Stop and look around at someone who might be fighting just a little too long or just lost a battle. Different opinions are well and good, but when someone is put at these lengths (feeling there are no more options or alternatives), it's time to drop the ego and pride and reach out. Sometimes we are so used to fighting that we overlook WHO it is we're fighting, just so we can get the fight done and over with.

A house divided...

I am proud to be a part of such a wonderfully diverse and tight knit community. Don't feel like you have to shoulder it alone. If you feel your "light" going out, borrow someone elses for a while until you feel strong enough to relight your own. I may be new to this Autism World, but I'm decent at being leaned on. You have a community at your fingertips. Humans are social creatures and have relied on each other for thousands of years. Don't feel like you have to reinvent the wheel because you don't want to "burden someone else."

Prayers to the family, they're going to need them.

Carrying extra "torches",

No comments:

Post a Comment