Today is World Autism Awareness day. People around the country and world are “lighting it up blue”. The recent studies have helped bring more awareness lately with it’s startling 1 in 88.
I don’t have anything special planned. No blue light bulb, no series of posts. And it’s not that i’m hatin on anything–it’s just that most of my audience–YOU–already know and are aware. It feels like preachin to the choir, frankly.
Yeah–I may have some new readers–but they will become aware soon enough of the role of Autism in my life–and now theirs.
So, I thought i would bring you a piece i wrote last year at this time–a piece that got a lot of views, comments and feelings. Last year i got involved in an alphabetic post for April (one letter per day, sundays off–it’s prolly going on again this year too) starting, of course, with the letter A…
A is for Autism
(originally posted April 1, 2011)
A is also for April, which is Autism Awareness Month. And I realized, when I started writing this post, which was looking to be the ubiquitous “Autism” post, “A” stands for a lot of other things too…
A is for ALL-ENCOMPASSING, which this disorder can be on the worst of days. And sometimes on the best of days. There is no hiding from it, no matter how long you stay under the bed.
A is for ANONYMOUS, which you sometimes feel in the sea of parents of neurotypical children who have no idea what you are going through. Or what you sometimes wish you were when your child decides to melt down in public.
A is for ASKING questions–which starts when you begin to suspect, and never ends, after the diagnosis, after therapy, after an IEP, after he grows, after he regresses…
A is also for ABILITY, ACCESS and ACADEMICS. You know how smart your kid is. And you know what they’re capable of. I mean, this guy is a friggin genius here, am I wrong? Some parents are lucky enough to have teachers that know the same thing. And some have to fight to make sure these three words work hand in hand so that each child is receiving a quality education. Otherwise you have to open up that economy sized can of whoop-ass that is fueled by your…
ANGER, the anger you feel about the diagnosis, the anger you feel at the professionals you refuse to take you seriously, the anger you feel at (insert your deity/faith here) for forcing you to deal with this, the anger you feel at those neurotypical parents for no reason other than jealousy, the anger you have toward bok choy because you don’t know how to cook it, and the anger you have toward douchebags who judge and mock your child. Anger can be strong but so too is
ACCEPTANCE. Once you accept things get easier. You start working from a point of progression instead of fighting it. You move FORWARD, and everyone is happier for it.
A is also for ADAPT–the thing you have to learn quickly, because Autism doesn’t let you make any long term plans. And you never know what it’s gonna bring each morning. So you assume a boxer’s stance, and get ready to rumble.
A is for AGENCY–the many, many agencies you’ll have to work with to get your child the services he/she needs. Services your taxes may or may not pay for, or that you will have to pay for, or that the insurance company says your kid doesn’t need, making you engage yet another agency. State, local, national–there’s an agency for everything, and everything has an agency.
A is for ANXIETY, yours and your child’s. Everyday you are anxious that your child is gonna keep it together and not meltdown. And everyday, they are anxious because the world is so intense. It may require prescriptions, or therapy or sensory deprivation tanks. It’s like a weird houseguest who just stays and stays, and doesn’t really talk to anyone, but stares all the time. Like, you wanna kick them out, but it’s aunt Charla’s kid, and you can’t really.
A is for ADVOCATE. You are your best child’s advocate. No one in the world knows your child the way you do. And no on would fight harder. A bulldog. A rottweiler. Teeth bared and snarling.
A is for ANSWERS, which you may never get. Or you may get too many. That contradict each other. And give you more stress and more anxiety and make you reach for…
ALCOHOL. Sometimes you have to remember that you are an adult, and that adults have special beverages that allow them to unwind after a particularly rough day. or hour.
A is for AMAZING–our kids are capable of amazing things, as long as you believe it.
As much as i hate how much this word is used in “Oprah-like” circles, A is also for AUTHENTIC. At some point, you realize that you must live as authentically as you can, otherwise Autism will chew you up and spit you out with no regrets. If you are not coming from a place that is true, then you will just be flapping and spinning and repeating the things other people say. Sometimes that authenticity will hurt, offend and discomfort others, and you have to be willing to live with that. That’s what being authentic means–being YOURSELF above all other things. It requires a great deal of navel gazing and self-judgement, and sometimes the ghosts of your past can be frightening. But nothing feels better than waking up in the morning knowing WHO you are and what you want.
And lastly, A is for ALWAYS. This disorder may be with him for the rest of his life, but so will my love. ALWAYS.