World Autism Awareness Day

Today is World Autism Awareness Day.

 …in case you live in a bubble without internet, television, or radio access and haven’t already heard. 

Of course, I say that, but yet I’m irritated to hell and back that Google didn’t alter its homepage image today in recognition.  ???  Because there was never a logo that begged more for a puzzle piece, so how does that work?

The concept of this day (and really, week) is great, and more power to everyone involved in raising awareness throughout the world.  Incidentally, I hope we’re raising awareness about more than nonverbal autism; I know that CNN has a wonderful article written by an Aspergian someone on their staff.  I also hope we’re doing more than bitching about vaccines and raving about gluten-free diets.  Yes, those are important issues, but they aren’t the only issues. 

Have you noticed that anything talking about Autism Awareness seems to end up being the same few things over and over again?  If you’re a parent of an autistic child, I assure you, you’ve noticed.  Currently the winners are: 

• A list of early warning signs.
• Jenny McCarthy talking about her son’s amazing recovery with a GFCF diet (among other things - and hallelujah to her, but not all kids have GI symptoms, people, including mine).
• Snippets of debates over vaccines and other possible causes. 

Things I don’t see anyone talking about:

• School with communication and socialization curricula. 
• High-functioning kids who still aren’t going to be able to make it in the world if they aren’t able to get some adaptive therapies - that their parents can’t possibly pay for. 
• The fact that, in most states, the public school system is not even close to adequately equipped to deal with the needs of these children but that yet it is still a bloody war that is left to the parents to fight alone to try to get proper services for their child, often either failing or paying such a high cost emotionally, mentally, and financially by the time they see any measure of success that the mere act of trying to facilitate their child’s education—one small part of the child’s needs—can destroy their lives, relationships, and family.
• And oddly, am I the only person on the planet who thinks someone should start talking to the ‘normal’ rest of the world about how to deal with people with deficits in communication and social skills?  Maybe it’s time that someone ELSE adjust besides just the people who are already in the fight of their lives?  Just, ya know, maybe.

CNN has dedicated a huge amount of their day’s programming to autism, which is fantastic, truly.  It would be even more fantastic if it hadn’t inspired someone to call me repeatedly to tell me that it was on and that I should watch it.  I’m pretty sure it would be deemed incredibly rude of me to reply, “In case you hadn’t noticed?  I’m Aware.  With a capital A.  YOU watch it.  Call your friends and tell THEM to watch it.  Please, scream it from the highest rooftop.  But me?  I’m covered.”

Now, if you’ll excuse me, I have to go spend some time with my autistic son, whose programming is dedicated to raising my Awareness 24/7/365.

Funk-y

If you’ve ever thought to yourself, “Gee, I really wish I could get myself into one hell of a funk right now,” I’m here with your solution — because that’s the helpful kind of chick that I am. 

All you need to do is go through your finances with a semi-fine-toothed comb, realize how little money you have and how truly in debt you are, and then literally pour your heart out on paper to beg someone for as much financial aid as they can possibly give you so that your special needs child can continue to get the special needs education that he’d be completely screwed without.

It’s just that simple.

Well, not entirely that simple.  If you want it to be a really good funk, you need to repeat the process every year.  By year 4, I assure you that you’ll be thoroughly demoralized.  I know that you’re ready to get started right now!

I’d go to sleep for several days in an effort to rid myself of this slimy funk-y-ness, but tomorrow, my husband and I have to meet with a bunch of professionals so that they can finally tell us, officially, that our son has an ‘educational diagnosis’ of autism.

At which point, we’ll turn to each other and very calmly say, “No shit.”

14 Quarts Low

I’m restless.

I’m listless.

One of these is generally true at any given moment.  But, it’s moments like these, moments …nay DAYS like THESE… that cause the problem - days when I am both.

Since this seems to have been a continuing theme for the better part of at least a couple of weeks (is that in ADD-time?  a month? 3 days? who the hell knows…), I finally decided to try to do something about it today, on my day off, and upped my sorry ass dose of Adderall today (truly, people, I’ve been taking only 1/4 of my prescribed dose for quite a while now, so let’s not get all bogged down in the “OH MY GOD” of having adjusted my own meds, shall we?).  The end result for today?

I’m restless, listless, … and jumpy….and irritable, short-tempered, and downright pissy. 

Now could be a good time to talk about things that don’t work well with having an 8-year-old aspie in the house.  Why?  Because his normal state is as follows:  demand, demand, demand, demand, bitch, moan, complain, grump grump grump grump grump grump grump (repeat).

And so you see the contraindication to anyone else in the house being allowed their fair share of pissy days.  This is a problem, especially when your family is just completely on your own (can’t just send him over to Grandma’s for the evening because she’s a few states away — not that it would matter if you could because getting spoiled at the grandparents’ house only ramps up the pissy when he comes home - for days - but I digress-ish).

I’m sure that if SuperMom stumbles across my blog, I’ll get an earful about what it means to be a parent and what a wretch I am for be such a whiner that I have to be the mother and not the child in today’s equation, but here’s the straight poop there, SM: 

I can count on one hand the number of spontaneous hugs AND kisses it has ever received from said child, let alone any other spoils of so-called “normal” motherhood (pictures colored and drawn for you, cold cereal on a tray on Mother’s Day, blah blah blah).  I have never been called, “Mommy,” because the AS was full-freakin-blown by the time he learned to speak, which meant the more formal “Mom” was the order of the day.  I don’t get to sit on the bleachers at the ball field, cheering on my son and his buddies because (a) a ball field is a place of loud noises and (b) buddies?  I don’t get to vent and relate my frustrations to the other moms while we drink our Starbucks and then talk about Desperate Housewives; instead, I barely have any friends because they either run away in fear of what they can’t possibly understand or I end up giving them up because they can’t possibly understand - and I don’t have that kind of time because I spend every waking moment attempting to educate my child so that he can better understand one more complicated nuance of the world that has absolutely no interest in trying to understand him. 

So, yes, every once in a while, I find that I have been sucked completely dry.  I find that I’ve forgotten how to be myself, a woman, a partner, a person - how to even just be.  Most parents, whether they realize it or not, occasionally actively get something back from their kids.  A kiss, a hug, an excited to see you millisecond - something that is a deposit of goodwill, faith, hope, joy - a reward, if you will - a token, a tiny payoff for your blood, sweat, and tears as a parent.  Most parents have no idea what it is like to live without that, virtually entirely without that, from their children.

I love my son.  There are no words for how much I love my son, and there are no words for what I’ve gone through in order to love him that much. 

I have a right to my broken heart.