Awareness...

This month is Autism Awareness Month, the month that people are asked to be more mindful of autism. This is not to be mistaken for Autism Awareness Day. Which happens during Autism Awareness Month, but are distinctly two different things, apparently.

Today there seems to be an awareness month, or at least an awareness day, for just about everything. For instance, there is a National Ice Cream Month, Oral Hygiene Awareness Month, National Novel Writing Month, Mathematics Awareness Month, National Honey Month, and a Jazz Appreciation Month. To coincide with these month long awareness observances, there are specific days such as Pig Day, International Day of Forests, World Thinking Day, Bicycle Day, Star Wars Day, Take Your Dog to Work Day, Towel Day, World UFO Day, World Password Day, World Television Day, and World Toilet Day, just to name a few.

But there is a problem with focusing on awareness...
'Awareness'. . . tricks us into thinking that thought is the same as action, that acknowledging something is the same as fixing it. Awareness is a problem masquerading as a solution... awareness should be the first step towards action, not the last. It’s the means to an end, not the end in itself. And that's exactly the problem - Now that “awareness” is so trendy, we seem to have forgotten about that pesky second part, the part where we actually do something (When is 'Awareness' Awareness Month?, Charlotte Alter, 2014).
In our house we are always aware of autism believe it or not. In fact we aware of autism not just on April 2, or during the month of April, but every single day of our life.

You could say that we have autism vicariously.

Autism fills my free-times with meltdowns, my night-times with destructive whirlwinds, my day-times with disjointed syntax, my some-times with forever child innocence, and my all-the-other-times with the anxiety-driven stimming and rhythmically compulsive tick-tick-ticking - though in this house we prefer grunt, grunt, grunting.

Recently a friend of mine said he admired me, because of how I deal with my son's autism. Though I sincerely appreciate the sentiment, this is an idea that I don't understand. I had another friend a few years ago say something similar. He basically said, "I don't know how you do it." My response was, "Do what?" He couldn't understand how I handled living with autism, vicariously, or otherwise.

This question just doesn't make sense to me. It is like asking: how do you live with brown eyes?

Living with autism is and always has been second nature to us, because twenty-one years ago it appeared and has been here everyday since.

Trust me, my family is ordinary, and we didn't go to school or take any special class to learn how to live with autism. To us it is just life, and we live it as best we can. Believe me, we aren't saints, and I guarantee you that we do it wrong - A LOT!

Take these few examples as for instances of how life around here isn't much different than around your place:

Your child may have broken a window playing baseball in the backyard. Whereas mine...

Cut. A. Basketball. In. Half. With. Scissors.


Your child may have torn a hole in their jeans playing rough on the playground, whereas mine unravelled, not just one pair, but two pair of iGloves because there was a fray in the knitting.



Your child may have lost the charging plug to their iPad when they left it at school, whereas mine cut up a pair of Converse All-Stars with scissors, because they got dirty!


Your child may have wanted to express themselves and had their hair cut into a mohawk, and dyed blue, whereas mine had a sobbing meltdown as we stood in the middle of Fantastic Sam's lobby because he liked his hair "shaggy" and didn't want to get it cut short "like a man."

Your child may be 13 going on 20, whereas mine is nearly twenty-one, but refused to be older than 19, because then he remains a teenager, and therefore not "a man," because he doesn't want to "get old, like you and grandpa, and walk like this..." as he then simulates walking hunched over at the back walking slowly with a cane.

There are other examples I can give, but suffice it to say, summoning my best Yogi Berra, life around here is exactly like life at your house, just different.

Being a teenager - perpetual at least - we struggle with communication as all parents do. We still have exchanges like:

"Sorry mom for saying the 'F' word." 

Or, "I'm sorry I called you a $&%#@ dad."

Then there are those random exchanges like,

"Um, Mom?" 

       "I'm Dad."

"Oh, um, dad? I find you and mom guilty of wasting my time!"

And we even have those displaced syntax conversations that go something like this:

"Mom, what is discouraged?" 

     "Where did you hear that word?" 

"George Bailey on 'It's a Wonderful Life.' Mom, I love being discouraged."

So, this month, and every month, we are aware of autism. But we are not just aware, we peskily choose to do the 2nd part, to do something about it.


We choose to do the best we can, however we can, as often as we can.


We aren't perfect. But, if I was to try to isolate the pesky 2nd part, the "do something about it" principle we live by, my guess would be that it is the same principle that you probably live by, and just don't realize.

When your child was born you knew they would grow up, be a teenager, and become an adult, and somewhere in the back of your mind, you remembered what it was like for you, growing up and being a teenager, and then an adult. And knowing all of that you accepted everything that that journey was going to entail - good and bad. Well, it was no different for us when the Doctor said, "Your son has autism." We didn't have a perfect picture of what that would be like, but we could certainly guess, and speculate.

And, so we accepted that our vicarious-autistic-life was not something that was going to be, or was, but what is.

Yes, we will face obstacles, and so will you. We will have joys, and so will you. We will have the good, the bad, the ugly-word, the sweaty, the colorful, the never-a-dull-moment, the emotion, the stirring, the draining, the burdensome, the intrinsic, and the indelible - just like you!

Rather than focusing on the obstacle we choose to see the opportunity, the growth, the fun, the humor, the character building, and the spiritual growth.

Storms may come, and when they do, we try to keep ourselves protected from the rain the best way we know how.


And, we keep our eyes focused on what's important, and what matters most.


To paraphrase a line from a recent movie - we do a lot of quoting movies around here, so this is very natural:

Despite knowing the journey and where it leads, we embrace it. And, we welcome every moment of it.

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