Thursday, April 26, 2012

I Hear You

It seems such a little thing, really. A thing that millions of parents across the country experience all the time, yet something every parent of a child on the spectrum prays for, and fears will never come.

 An actual conversation with your own child.

 I've been guilty of taking this for granted myself. Many a night at the dinner table, my eyes glazed over and I thought FOR THE LOVE OF PETE, big C, could you PLEASE STOP YOUR LIPS FROM MOVING FOR FIVE SECONDS?

 At three years old, he offered his opinion on everything from the moon in the sky being crazy because it was out IN THE MORNING, Mommy, to broccoli being "so gisgusting."  If you'd asked me then, I probably would have told you I'd give my right arm for a quiet, introspective child. A child that would speak when spoken to, who didn't jabber incessantly like a magpie on crack. A child who would, on occasion, let his mother escape to the bathroom in peace.

 Fast forward a bit, and I'm staring at little C at the same age, agonizing over the realization that he may never have the tools in his toolbox to really talk to me. I would have given BOTH arms if someone would just tell me that eventually, I would be able to know that if he were bullied, or hurt, or--oh, hell--wanted his mom to just stop hovering already, he would have the words to let me know.

We've played the game for a while now.  I pick him up at the end of his day, and we chat during the long (LONG) commute home.  "How was your day, baby?  Did you have a good day?" I ask.  "YES!" he chirps in response.  Always the same tone, same inflection, and while my mother's heart hopes that one day he will be able to truly answer that question, I know that, for now, his answer is a script.  Knowing the expected answer, he provides it.  So much of his time now is spent learning all the things he's had to catch up on, he tends to think of things in terms of "right" and "wrong" answers - the concept of objective opinions is still hazy to him.

There's so much I want to ask him on these car rides, and I have miles to think about it.  What did he do today?  What was his favorite part?  Who is his best friend?  What's his favorite color?  But his talking points, few and far between on that long drive, typically consist of "Super Why!" and pointing out random letters and words outside his window.  Some days the puzzled silence that greets my questioning is just too painful, and I retreat to the radio.

And we try again the next day.

But last night, my friend, we had a breakthrough.  And I almost missed it.

We've been struggling with pooping on the potty (Editor's note: Apparently I've become one of those people who work their child's poop into casual conversation.  I'm surprisingly fine with that), and have been following up success with the same reward, every time. Piece by piece, we put together his special Super Why puzzle, just the two of us.  He is dizzy with excitement, putting each piece in place using his own method, alternating between gleeful happy dance and fierce concentration.  I humor him by snapping the occasional piece together, content to sit and watch his mind work.  This glance into his thoughts is precious to me - he works the puzzle unlike anyone else I know, and it makes my heart happy.

When he is done, his smile starts in his eyes, then spreads to his mouth until his grin seems bigger than his face, and his whole body wiggles in happiness.  He is looking at me, willing me to share in his joy.  That damned skill set and that puzzle might as well be the climbing of Mount Everest, for all the pride that fills my heart in that moment, and I tell him so.  "I'm so proud of you, baby," I say.

Later that night, as bedtime is dragging its feet again, he crawls up next to me on our bed.  His small body snuggles in against mine as sleep wages war on the tired eyes that seem determined to stay open, and his head settles comfortably on my shoulder.

It comes out of nowhere, and steals my breath.  Just three short little sentences.

"Poo poo potty.  Super Why puzzle.  Mommy so proud."

I am just drowsy enough that at first, it doesn't register.  When it does, I stare at him in shock.  My baby has just recounted a series of events for me.  An event that occurred some time before and was separated by several other subject changes.  He was excited about his success, wanted to let me know, and did.

My throat tight, I fought to keep my voice even as I replied, "Yes, baby.  Mommy's so proud."

Wednesday, April 11, 2012

Problems are problems

Holy cow, I've really got to find a way to hide my dashboard thingee. Every time I get the idle thought to log into this thing and jot down a few random thoughts, that NUMBER is there, and I get all panicky-like. Almost 900 page views is WAY too many to attribute to my mom hitting the refresh button a bunch of times just to boost my ego. Either I'm not as bad as I thought at this, or you people are really, really bored.

 Let's go with the former and move right along, shall we?

 I'm just going to go ahead and warn you that I'm probably going to sound like a whiny B tonight. Dealing with the school system never puts me in the best of moods. I almost feel kind of guilty writing about this, but I'm gonna do it anyway.

 Tuesday was Special Services Reevaluation Day. The day, once a quarter, that we bring little C to the always positive and full-of-perky evaluators for special services through our school district. This day, my friends, never fails to suck. 

Here's how it usually goes: C knows SOMETHING is up.  Daddy is gone, therefore not taking him to school.  Mommy is home, not dressed in her normal going-to-work clothes, and is looking anxious.  By the time we get to going left instead of right along our usual driving route, he is dead silent in the backseat of our car.  This could go one of two ways, folks.  Holiday Day = probable fun day.  Testing Day = BAD.  Maybe.

When we pull into the parking lot of the testing center Tuesday, C's hands are planted firmly over his ears.  His face is wary, suspicious, but he is reserving judgement still.  This is the place of the Hearing Test of Which We Will Not Speak, but it is ALSO the place with all the toys and the nice ladies who clap for him.

Only the Direction at the Top of the Stairs shall tell.

So, we walk across the parking lot, up the stairs, check in, annnnnddd....head straight ahead.

SCORE!  He is happy now.  Bubbly and chattering and FLIRTY, I swear.  For the next thirty minutes, he stacks blocks and identifies objects and beams at the lavish praise the evaluators heap on him.  I sit in the corner, analyzing the furtive glances the ladies pass back and forth and half suspect they think I'm a secret hypochondriac, just making up this autism thing.

I'm torn between pride and sadness.  Pride because they're right - he IS doing well.  There were only a few hiccups in those thirty minutes, not enough to qualify us for a thing.  They look at me as if I should be ECSTATIC over this.  Part of me understands - I am sure, in the course of their typical day, they see kids who have a much, much harder time of things than my baby.  We are lucky.  We've come a long way.  And I AM thankful for that.

But these days always serve to remind me, not just how far we've come, but also how far we've got to go.  My heart broke a little when Lady A started throwing out non-concrete questions.

"What do you do when you're tired, C?"

There is a moment of silence in which he searches for the answer - any answer - that will fit into this new box.

"Happy!" he declares, beaming.  He is WILLING this to be the right answer, and he stares expectantly at his questioner, waiting for applause.

"What do you do when you're hungry, C?"

A pause.

"Sad."  This time he does not look at her.  He is growing confused, knowing these are not the "right" answers, and he is not at all comfortable with that feeling.  Meanwhile, my heart is hurting - so many questions answered correctly, yet these two just killed me.

We finish up - paperwork is signed, follow up appointments are made, and Lady A and Lady B are oh-so-positive.  "We'll keep monitoring him," they promise.  "He's doing great."

I've been assured his conversation skills will come - just like object identification came, and "Mommy" came when I was abjectly terrified that it never would.  And I know it will.  It just breaks my heart when he has to work so damned HARD for things that come so naturally to every other kid.  I ache to know what's going on in his head (other than spelling).  I want to have this kind of conversation * with him.  I want to know his favorite color, and which girls at school he thinks are cute.

I guess, in the end, these are MY wants, and this thing has to be run at his pace.  He's just not there - yet.  And maybe that's okay right now.

*TPGTA is doing a series of interviews of people from all ends of the spectrum, all month long, here.  Same questions, unique responses.  Fascinating stuff.

Sunday, April 8, 2012

Egg hunt. Or Car hunt, whatever.

So I was feeling adventurous today. Also a little guilty, as having neurotypical older children in addition to an autistic child often leads to the NT kids missing out because little C Mommy can't handle things. So I decided come hell or high water, we were going on an Easter egg hunt today.

This experiment had, shall we say, mixed results.

Big C? He had a blast. Mission accomplished. Little C? He too had fun, albeit a different kind of fun than most of the other children.

Mommy? Well, Mommy is reconsidering her policy on abstinence.  I figure God would totally understand if I became an alcoholic at this point.

When my best friend first invited us to crash join in their neighborhood Easter egg hunt, I spent the next two days waffling between thinking "Hey, that would be a great development opportunity!" and "Oh HELL no," because really, what says fun like a hundred kids running around on a hill near an open body of water, all dressed relatively similarly to mine and paying scant to their surroundings?

Maybe it's just me.

Eventually, big C asked if we were going FOR THE MILLIONTH TIME, and I wasn't paying attention and accidentally said yes, and then I was stuck.

I can't be certain, but I'm starting to suspect there was a thought process behind that.

Upon arrival, big C immediately channeled his inner redneck and set up camp in a truck bed.

Seriously, all he needed was a beer

Little C was all OMG there's a tire in here!

Mom, I'm going to need you to stick this in your purse

Recently, he's discovered making faces at himself in reflective surfaces.  Which is, seriously, just about the 
funniest thing ever.

Note that big C is the only one getting the long distance shot.  I was pretty much glued to little C.

Two kids, one shot = TEN POINTS FOR MOMMY.  Even if it is @#%^ upside down

Two words: "Cars" erasers.

Annnd, just like that I lost him.

There was a brief moment in which he showed interest in this little girl, until he darted over and snatched a "Chesco Doodie" (read: Francesco Bernuli) eraser from her.  Um, happy Autism Awareness month?

This one was having his own kind of fun.  As a side note, whoever put stamps in the eggs:  SO NOT FUNNY.

Really, though, things went better than I expected, all told.  And as a bonus, when you look at it from the perspective of SPREADING AUTISM AWARENESS, I'd say the day really couldn't have gone better.  I'm gonna go ahead and say I planned it that way.

Thursday, April 5, 2012

When the music's gone

Tonight, I read this.  [WARNING: warm and fuzzy it is not.  It's hard, hard read]  As if her personal blog wasn't enough, this woman has decided to start blogging over at Huffington Post, further ensuring the futility of water proof mascara everywhere. 

Yesterday, I and several other parents stormed passed respectfully through security at our state capitol in order to show support for the BCBAs who have worked such magic in our children.  Also to show a healthy amount of disdain for our local board of psychology, but that's another rant.  For three hours, we sat in uncomfortable chairs, reliving our high school speech class nerves while waiting to be called to speak.  I was all prepared to write about that - how proud I was that we all came, how much of an impact I thought it made to ensure that seven senators came face to face with the parents and therapists on the front lines of this battle.

And I am proud.

But after reading that post, I am also broken-hearted.  Because we have so much more work to do.  It's not a battle.  It's a damned war.

I'm not going to say I haven't had my moments of despair and rage at autism - we all have.  But nobody forced me to become a parent, and Lord knows no one made me any promise that it was going to be all sunshine and roses.  At this point, I've more or less accepted that bigger Hands than mine were involved in shaping the destiny of this child of mine - my job now is ensuring he has the right tools to find his own way along that path, and to point him in the right direction.  That should be every parent's job.

As "high functioning" as little C is, those kids had just as much potential.  They were just as capable of changing the world.  Now, it looks like we're going to have to change it for them.

We've got to end this stigma - this Autism-Is-the-End-of-the-World stigma.  As I played a run-and-tackle-goodnight-hug game with my boys tonight, little C ran to me, hitting me like a sack of bricks and nearly knocking me over with the force of his delight.  As I looked at him, cheeks flushed and breathless with laughter, I thought, This is the face of autism. Just as much as the face of frustration or confusion or anxiety that he also sports from time to time, this is it.  It's up to us - those on the front lines - to make people see both sides of the coin, to see that light and laughter - that person - before anything else.

I can't really add anything to Jess' post.  As usual, her words are poignant and just about perfect.  I will reiterate her point that there is nothing more noble than reaching out for help when you need it, and we all - at some point or another - need it.

Autism Speaks

ASA Chapters

Welcome to the Club

Monday, April 2, 2012

Light it up, baby

Having recently been made aware of the fact that a few people other than my mom follow my little blog (hi, mom) I decided to try to make this a more regular thing.

You're welcome.

Or I'm sorry, whichever is more appropriate.

Also, I found this nifty little tool in my dashboard thingee that shows me where my traffic comes from, and it looks like people are finding me via Google a good bit of the time.

This is the part where I apologize to anyone who accidentally landed here thanks to Google's interpretation of this post's title.  I'm just gonna go ahead and warn you that this is not that type of blog.

You're welcome.  And please feel free to stick around.

ANYwho, in case you're not aware of it, today kicks off national Autism Awareness month.  Henceforth, this will probably also be known as the month about 60% of my Facebook friends click the unfollow button next to my name.  I can get a little obnoxious.

But let me explain WHY I have no problem with this.  Other than my lack of social skills, of course.

Despite recent media coverage putting the word out that statistics taken from data more than four years old show autism being as prevalent as 1 in 88, or 1 in 54 in boys, a shocking amount of people still know very little about autism.

This, given that autism affects more children across this country than diabetes, AIDS, cancer, cerebral palsy, cystic fibrosis, muscular dystrophy or down syndrome - COMBINED - is a problem.

Because autism is not a death sentence.

It does not mean a child - or adult - is "broken," ready to be relegated to the social equivalent of the trash bin.  Some of the greatest minds of our time have been affected in some way by The Spectrum.

It is important - so important - for people to see both sides.  For every Rainman, there is an Einstein.  For every LulzSec hacker, there is a Temple Grandin.

And then there was the guy who invented Pokemon, but we're not going to talk about him.

The point is this - the world is shaped, in one way or another, by those who stand out.

In so many cases, the difference between standing out and being relegated to that trash bin, is perception, and the influence of those around the affected person.

Temple Grandin had her mother, who refused to believe that just because some idiot had a white coat and a PhD behind his name, it didn't mean he knew jack about what her daughter was capable of.  The animal behavior and agriculture industry hasn't been the same since.

Einstein's mother reportedly knew something was different about her child - he was mute until age three - but  persisted in getting him to do things outside his comfort zone from an early age, which is the basis of autism therapy today.  We all know how that turned out.

Even Steve Jobs, who has (with some controversy) been rumored to have been on the spectrum, benefited from this perception shift.  When he found out as a child that he was adopted, his first instinct was to identify himself as "not wanted."  His father, though, swiftly corrected him.  "You don't understand," he told Steve.  "We chose you specifically."

Perception is everything.

If we can raise awareness, change the perception of autism, see the potential in all the 1 in 88s instead of just the disability, who knows what these kids can accomplish?

That's why tonight, we lit it up blue at our house.  As I flipped the switch in our foyer, I explained to big C, as best as I could, how that light stood as a reminder that those with autism are no less loved, no less deserving, no less full of potential, than those without.  About ten seconds in, as his eyes glazed just the tiniest bit, I could tell I was losing him, but I'll go over it again with him next year - and the next, and the next.    But he's already got the fundamentals down.  He sees his brother first, and the quirks all take a back seat.  They are inconsequential to who he is, and are irrelevant in relation to his potential.

Now if we can just get the rest of the world to get on board with the common sense of a four-year-old.