A is for Autism

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.

tagging

so i got tagged in another meme...




the lovely Jen over at Living Life with a Side of Autism (a seriously great blog, people--check her out!) decided to tag me in her attempt at underachievement. So i'm supposed to give you 7 facts about myself--heretofore unmentioned.

hmmmmm

1. i am not perfect at it, but i really dig on keeping a clean house. Actually i live in fear of becoming a hoarder, so keeping the house neat and tidy (and empty) makes me feel sane.

2. I really hate folding laundry. I have no problem sorting, washing, hell, i even hang it outside to dry. But there is just something about folding that makes me avoid it.

3. I don't like, or "get" iced coffee. I mean, what IS the point?

4. i view buying bread as a personal failure. Unless it's from the bakery outlet for half the price.

5. i hate talking on the phone. and i've been like this LONG before the advent of texting. And thank G-d for texting.

6. I consider myself a solitary witch. And a Jew. I don't find them to be mutually exclusive. I'm sure my rabbi would disagree. None of my witch friends would, though.

7. i miss trees. but not mold.

now i'm supposed to tag 10 people for this--but i'm not sure i can even name ten bloggers i know that haven't already been tagged for this, so imma name a few that prolly don't follow my blog, and those who do? heh heh.

1. Jen at Unedited
2. Paddy over at Flusterkuff
3. Tulpen at Bad Words
4. Debi at HuntersLyonesse
5. Jodi at The Mean Mom

a new thingy

so, Not Just Another Mother Blogger just brought this to my attention, and it sounds interesting. and i loves me a good writing challenge to keep those creative juices flowing. TOmorrow starts "A". That one, i think will be pretty easy.

join me back here tomorrow! I'm off to look up words that begin with F...

scrilla!

Well, its official. I can now claim the title "writer" as an actual profession!

Today, when i picked up the mail, I got my first check for words scribbled on paper. An actual check. Someone thought it was a good idea to give me money to write nonsense.

awesome!

As some of you may not know, because you haven't been paying attention to the umpteen FB notices I've made, I recently published a piece with Chicken Soup for the Soul. No--not the "my cat's life" issue--which is a goddamn shame--but for the "new moms" edition. Someone, somewhere, 9 months pregnant and wishing that her ankles would just fucking STOP SWELLING, will open this book as the ubiquitous shower gift, thumb through it once or twice and put it in her next yard sale. *sigh* kinda dreamy, huh?

And don't think i'm done with them! I'm working on another awesome piece of blather that is sure to make every mother over the age of 46 cry like a baby. Or maybe just John Boehner.

Professional! woot! Just try and stop me! (well, at least wait until i deposit the check...)

btw, the company gave me a bunch of copies to sell, in case you know someone who needs a coaster or paperweight...

Blog Gems #12

I love it when i find out there's a new blog hop entry available when i have NOTHING to write about--or the energy, time or wherewithall to actually come up with somethign new and creative. This blog Gem is to air an old favorite. This was a favorite blog post of mine early on in my blog--and Ben's diagnosis. Something clicked in me when i wrote it, and i felt--i don't know--a little more peaceful about the whole thing, even thought the post itself recieved NOT ONE COMMENT! *sob*

Thanks Krista for helping me flesh out my thoughts on this one so long ago at your kitchen table:

Friendships

The Dictatorship

The folks at Parents magazine, after being hollered at by a number of parents for NOT having an issue dedicated to Autism for April, have opened up a request for blog entries to describe life with Autism. You can follow that link here... so here was my attempt at 500 words. (yeah right)

I was trying to figure out how to describe our life with Autism, struggling to find the analogy that fits our life. Then I turned on the news and realized: living with Autism is like living in a country ruled by a crazy dictator.

Now, I won't name names here, but the headlines have been full of certain leaders with questionable wardrobes and domestic policies that make us all scratch our head in wonder and rage, “Who is this guy, and how can he have been in power for so long?!?”

You see, for the most part, our world seems like any other. We get up everyday and get ready for pre-school. My son greets the bus driver with a giant smile. After school he enjoys a classic PB&J and watches Blues Clues. Like any other kid, right?

Except that the morning routine must be adhered to with utmost strictness lest we fall prey to a near-nuclear meltdown, his bus isn't quite as long, his sandwich must be cut into exactly four squares, and there are only one or two episodes of Blues Clues he will actually endure.

On some days even the strictest adherence to this despot’s routine won’t make the frustrations, screaming, and violence go away. Other days can be a maelstrom of sensory overload, communication issues, and absolute frustration with life—a veritable crowding of the city square to protest this disorder and its inequities. And you never know when that dictator is going to open fire on his own people, terrorizing your world while leaving the rest of the planet gob smacked. One day is fair and sunny, with sweet, charming smiles and Lionel Richie concerts, and the next day you will be accused of adding drugs to your Nescafe and practicing sedition.

Seriously, you never know what Autism is gonna bring.

So you learn to live simply, in the moment, learning to rebuild quickly because you also know that each firefight will have an end, and you'll still be the wounded soldier making the hummus in the morning while HE wakes with a cheery smile, not even recalling last night’s uprising.

In those quiet moments when Autism finally sleeps or retreats, you sit and hope--hope that SOMEONE will recognize what you are living through and help. That if you wave your flag enough, the rest of the world will stand to attention and start launching their missiles to help get Autism under control. That if you make your struggles known to other parents, they might occasionally have enough empathy to stop building that new addition to their royal palace just long enough to help you keep one wall standing.

This is what we are fighting for, waiting for, praying for; that some sort of UN coalition will recognize our struggle and raise their voices as well. 1 in 110. That's how many American kids have Autism. And Autism isn't just something that will go away. Those diagnosed, like my son, will struggle with this for the rest of his life. This dictator will not be unseated by an invading force and a no-fly zone. But with the right supports, and worldwide awareness, we can get him under our own control. In the end, that's all we want--a few more hands to make easy this burden. A research donation is nice, but what we really need is empathy and offers to help just a bit; to arrange a play date with your neuro-typical kid or just drop by to help fold some laundry and share your war stories with someone outside your bunker…and to not judge us with disapproving glares and remarks when my child sometimes cries more than you find appropriate.

A little help can make a big difference to a parent who’s already digging deep to give more than they can. Enjoy the roof of your beautiful palace during the rain, just once in a while notice that we still only have one wall standing.

Patience

I've never really been a patient person. Oh, I can feign patience with the best of them, and even convince myself sometimes that I've got a smidge of it. But really I don't. I hate people driving in front of me, being ahead of me in line, other people actually speaking out loud, price checks, cocktail parties with people for whom I have no respect, and anything that involves waiting for another person or mode of transportation. The Old Man can tell you, I am the worst until we actually get on the plane/train/automobile.

But it isn't just waiting. I've got no…how do I put it…I do not suffer fools gladly. I have a REAL lack of patience when it comes to stupid people. Now of course I don't mean the uneducated or people who necessarily think differently than I do--but I REALLY cannot handle people who are speaking from ignorance as if they are geniuses and DEMANDING that I agree with them. It’s a wonder I've lasted this long on FB. I strive to be patient with others daily hourly minute by Oh, for godsakes, I try, ok? Some days are better than others, and on those days, I try to stay indoors. But I swear, if one more person says ANYTHING…

And YET

Even though it never feels like I'm being patient enough, I feel like Ben has taught me more about patience than I'll ever learn. I mean, he has these days--like today--in which NOTHING is working right, which involves a scream or 20, and he decides that he wants a sandwich, and then he doesn't, and then he does again, and he spins himself into a frenzy, and he scripts and scripts and scripts, and he hits and kicks, and he looks at me with those big eyes as if begging for me to fix it, even though he has no idea what "it" is. And even though it can be everything for me not to break down into tears before him because he's breaking my heart, somewhere I've learned to just hold his hand, or draw him into a hug(if that's what he wants) and repeat his script, and applaud his spins, and play his train DVD for the upteenth time, and say everything in a low soothing voice to calm him down. I've learned to drop plans in a heartbeat, change directions quickly, and throw the earlier part of the day out the window.

It would be so easy to holler and get uptight--and it's not to say I don't. Sometimes his frustrations and my hormones go head to head, and no one wins, and even the dog goes into hiding. But for the most part, when I can get a grasp on my own feelings and frustrations, (or at least set them aside for 20 friggin minutes) I am able to be the voice of calm in his world, until we can get to a place where he can just be, without competing with his senses and the world for a thought or an idea.

Perhaps its because I know these days usually mean growth for him (and possibly for the rest of us?). It usually means he's working through something and we will soon wonder at a new skill, or use of vocabulary or expression of emotion. But until then, we just have to practice patience. HE ain't gonna learn that one on his own. So I guess it's up to me the be the patient one. Which is seriously an exercise in itself.