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.

365

Well, baby boy, here we are. It's been a year since you turned two, a year since I sat in a doctor's office, on just this side of hysteria, hearing my own voice ask as if from a distance, "Is there any chance at this point that he will develop normally?"

And that doctor - that @#$%* doctor - replying matter-of-factly and oh-so-casually, "No."


A year ago, we packed up and drove to our first autism event - an annual 5K. Just before the runners lined up, the coordinators of the event said a few words to commemorate the event, to remind us why we were there.  The speaker rattled off statistics - a staggering 1 in 110 - then asked for a show of hands.

"If you or someone you love has autism, please raise your hands in a moment of solidarity.  Then look around you, because this - THIS - is your community."


All the hard moments in my life up until that point couldn't compare to that one, baby boy.  That was the day that I stopped being "just" a mom, and became a mom that belonged to - and NEEDED - that "community."  It petrified me.  So much was riding on every decision I made from that point on.  Would I fail you?  Would I be able to give you what you needed, when you needed it?  How in the world would I figure out where to go from here?


I ran that race with everything I had, baby boy.  One foot in front of the other, mile after mile.  Pushing like it would do me a d*mned bit of good.  I rounded that last stretch, crossing that finish line and searching for your precious face, finally finding it among the crowd.  It was turned away from me, oblivious to the excited instruction from your grandmother to "Look, C!  Look!"  You didn't know what was going on, but the crowds and the inability to take off and run as you so obviously wanted to meant nothing good to you.

That was the day I met the people at your therapy center.  Just days before, I had signed the paperwork to send you there with absolutely no idea how we were going to afford it or juggle our work schedules, but knowing that somehow, some way, we must.  As we stopped by that booth, and I attempted to place faces with names and voices heard over the phone, I had no idea how our life was about to change.

A year ago, I knew nothing about autism, baby boy.  But you taught me.  You taught me what it was, and what it was not.  It was hard work.  It was patience.  It was consistency, and it was bottomless wells of love.  It was not isolating, it was unifying.  It was not cruel - it taught compassion, and brought about compassion in others.  It was not the death of any dream - it simply bore new ones.

A year ago, I would not have recognized the child you are today.  You have taken on every challenge thrown at you, and tackled it to the ground.  In the process, you have changed not just yourself, but everyone around you, making your daddy and I better parents - better people.  You have made your brothers better siblings, and planted the seed of compassion and patience and empathy in them, forging the way for the next generation.    Every time I hear big C patiently instruct you on some new mischief he's decided to involve you in, or watch K sit down on the floor to play with you like there's nothing in the world he'd rather be doing, I struggle to hold back tears of gratitude.

I'm gonna run that race again this weekend, C.  I'm gonna to give it all I've got, but this year I'm going to know what I'm running for.  And when they ask for that show of hands, my hand won't go up trembling with uncertainty this time.  It's going up with pride.

A year later, I flash back to that doctor's words.

"Is there any chance at this point that he will develop normally?"


"No."


She was right, baby boy.  You are so, so much better than normal.

Mommy's not as smart as she thinks

So I know it's been forever since I've posted, and I really have no excuse, other than IT'S EXHAUSTING BEING ME.  To summarize how things have been going, Teenager has decided that he's had enough of this never-being-sick thing and decided to compensate for all of those I-don't-even-know-what-our-family-doctor-looks-like years with a bad@ss case of kidney stones.  Which has resulted in the need for one, going on two procedures now.  Meanwhile, big C has embarked on some diabolical mission to discover just where Mommy's breaking point is and then dance merrily along the edge.  For the record, he's still in one piece.  So far.

Little C continues to alternately amaze and terrify me with the extent of his progress in therapy.  Some days I'm so proud I could burst, others I am seized with holy-crap-he's-smarter-than-I-am-and-what-am-I-going-to-do panic.  We still have our rough moments (hello, hair salon), but overall, he is laughing in the face of "reasonable expectations of progress."

We also still have our moments of hilarity somewhere in between.  Like practicing our "Negation Mand" protocol - I offered him a pea I was absolutely sure he would not want, in order to prompt him to say, "I don't want it."  Instead, he took it, tried it, then spit it out and looked at me as if I'd just tried to poison him.  So I (reasonably, I thought) assumed when I offered him a piece of similarly despised carrot, he would loudly declare, "I don't want it."

"C, do you want a carrot?"  I asked.

"YES!" he answered, with a delighted smile.

I waited with baited breath as he TOOK THE CARROT...

and threw it to the dog.  AND LAUGHED BECAUSE THIS WAS HILARIOUS.
Maybe I should have been more clear.

Little C: 1
Mommy: 0

We are also practicing "Attention Mands"...namely, getting him to preface requests with "Mommy..." in lieu of whining in order to get my attention.  The first stage of a new protocol is always the hardest.  For me, that is.  In order to make the connection, I pretty much HAVE to give him whatever he asks for when he asks for it correctly.  The first day, I am usually giddy with excitement that he is FOLLOWING PROTOCOL and happy to do this, but by the end of the week, I'm all "what is that noise, and WHY WON'T IT STOP?"  We're still in the early stages of our new protocols, but after tonight's incident, that phase is fading fast.

Little C: Chair.
Me: (ignoring him)
Little C: CHAIR
Me: (ignoring him again)
Little C: Mommy.
Me: Yes, C?
Little C: PUT ME [in the non-booster -seated, kitchen] CHAIR

This is how it's supposed to work, only eventually he's supposed to START with Mommy.  He's still being stubborn about that part.

So, after receiving his prompt and having the she-has-to-do-what-I-want lightbulb go off above his head, he demands to be moved from chair to chair, playing happily for roughly 5.2 seconds after each rotation.  What I don't realize is that he's gradually moving me closer and closer to HIS chair.  The one he eats in every night.

So, after four rotations of, "Mommy.  Put me chair," he lands in his chair.  Then he happily demands, "Mommy. FEED ME CHIPS."  I don't know when I've seen him smile bigger.

Little C: 2
Mommy: Somewhere in the negative


*I have so much more to tell you, including a trip to the mall playground, at which I may or may not have cried and scared every mom surrounding me, and the (thankfully successful) search for this.  But (thank God) it's bedtime, and I gotta go.  BEDTIME IS PRECIOUS IN THIS HOUSE.

Embarassing, and yet not surprising

It's been one of those days at the end of which I am nearing total meltdown mode, but here's a funny tidbit about my day...

My teenager is scheduled for a surprise outpatient surgery tomorrow during which they're going to remove a rather large kidney stone from his inner workings.  We followed this appointment up by rushing to take my 4-year old to a checkup that had already been scheduled with another physician.  Still a little frazzled from talk of surgery and anesthesia and this-kind-of-scopy and that-kind-of-medication, I realized I'd brought all of the pre-op paperwork into the pediatrician's waiting room with me.  And then I realized I was getting some funny looks, but with the way my day was going, I probably had managed to only put makeup on one side of my face or something.  SO totally not surprising.

Trying to take advantage of the few "free" minutes I had in the waiting area (such as they were, given the presence of a restless 4-year old), I sat down to fill out a few pages of paperwork.

When I turned over the envelope to open it, I realized the source of the funny looks.

I kinda forgot about the helpful little illustration the nurse drew to inform us about the procedure.  On the back of the packet I was holding.  Of a penis.

Holy cow, I need this day to be over STAT.

In Which We Remembered How to Be Girls Again

Back story: http://letters-in-the-heart.blogspot.com/2012/01/substituting-oxygen-mask-for-paper-bag.html

It started with a haircut.  Long overdue, I might add.  No, really, to the point that the stylist exhaled when she whipped me around to view the finished product, and said in a relieved tone, "That looks SO much better."

Um, thanks?

Oh well, I was in a good mood, and these people were forever on my good side, so I smiled, tipped generously, and was off to T's house.  We fueled up on coffee and tried to pretend we had any clue what we were doing.

There may or may not have been a soundtrack to this day.  Said playlist may or may not be found here: http://www.rhapsody.com/members/8b56j1/playlists/mp.158623591

Don't judge me.

First stop was the mall.  It turns out there are lots of other stores inside these places called malls that do not include children's items.  Who knew??

One of the most fun parts of this mall experience was discovering stores we had never seen before and did not know existed.  Better, we were able to walk into them with no clear purpose in mind and gawk.

It's like they knew I was coming.  AND was only reasonably certain both of my legs had received the shave treatment that morning.

And then there was this:

Which led us both to marvel that there is a market for lacy things that cost a fortune and yet serve very little purpose, and T to remark thoughtfully, "It's like there's a target on her butt."

She said it, not me.

Next up was makeup.  I'm not sure why it took a little cajoling to get the sales chick to warm up to us, but it was all worth it when she introduced us to these products:

Yes, you are reading those names right.  If you don't believe me, go here and here.

WHERE HAVE WE BEEN AND HOW HAVE WE MISSED THINGS LIKE THIS?

Pretty soon, we were spackled and sparkly and yes, lighter in the pocket book on our way out the door.

There was the mid-day meal, during which we fantasized about being Ladies Who Lunch before realizing quickly that we are, in reality, Ladies Who Are Poor and Have to Work.  But it was nice to dream for about five hot seconds.

Lunch was followed by a viewing of One For the Money, in which we first realized Katherine Heigl's Jersey accent is atrocious, and maybe it totally makes sense that she wants to come back to Grey's Anatomy.  Then it got better, and we realized we would be TOTALLY badass bounty hunters.

It was 2:00 when we left the theater, and we hit upon the brilliant idea of getting mani/pedis.  But as neither of us has had recent experience with mani/pedis, we were all, "Where do we go?" and "I dunno, let's try this place I heard was cheap."

Side note: MANI/PEDIS ARE NEVER CHEAP WITHOUT GOOD REASON

It ended up not being too bad, aside from the fact that we really (really) did not know what to do and when to put what where.  And the trying to talk over the massage chairs that were trying to beat us to death.  And the random guy that came in for a manicure, stayed for all of three minutes before he left in a huff, only to return twenty minutes later claiming that his technician had cut him.  TWICE.

We were exceedingly glad the manager seemed to like us, and didn't look at us like she did at that guy.  I'm pretty sure she had plans to follow him to his car and slash his tires.  It's a good thing for him that the two of us look like we'd make good witnesses in a court of law.

After this point in the day, I was pretty sure my kids were beginning to forget what I looked like, and my husband may or may not have been close to the brink of insanity, so we helpfully decided we would meet back at T's house, with kids in tow to ensure that they lived through the day let them have a little fun too.

The kids all had a blast...

as evidenced by Swamp People Jr., here...

...but, just to ensure that no day is complete without at least a little bit of drama, above Jr. Swamper promptly split the back of his head open by falling out of a chair and onto a tile floor.  After a panicked after-hours call to the doc, and T's subtle remonstrance to remember my oxygen mask (or maybe she was just trying to get me to place SOMETHING over my mouth at this point, I don't know), he soon was cleaned, pressure-applied and blood-flow-free.  Once I got him home, I had to jury-rig a bedtime bandage.

Because I am just THAT redneck

Well, the night is over, but we sure made a crap-load of memories today, and have sworn we will make time for this at LEAST once a quarter from now on.  

Yes, we missed our families, but they were waiting for us when we got home.  It may have felt like an eternity to us being away from them, but they survived just fine without us for a few hours.  And, even though the kids went to bed extremely late and will likely be up at the crack of OH-MY-GOD-IT'S-SO-EARLY tomorrow, we'll be in much better moods then, thanks to today.

Well, at least after a few cups of coffee.  

Substituting An Oxygen Mask for a Paper Bag

So, a few weeks ago, through a string of posts that would be exhausting to detail, I found this post.  It got me thinking - not a deep, thoughtful contemplative session, mind you, as I'm pretty sure that part of my brain has put up a Do Not Disturb sign in a frantic attempt to defend itself against against the barrage of autism coming its way.  Nope, I read the post, went "Hmm.  Well, that was nicely put." and went on about my day.

It stayed with me, though.  It was around the time that I noticed I had apparently only shaved one leg that morning (and shortly after nearly getting into a shouting match with an insurance company employee), that I thought it might be worth a closer read.  After said read, I decided that it's time.  Time to trade my paper bag for an oxygen mask.

With the excuse of birthday money to spend, I am getting together with my closest friend for a girls' day out this weekend.  Well, it's intended to be a girls' day out, but since neither of us is entirely sure what a girls' day out looks like anymore, it may end up being a girls' lunch, followed by bewildered girls' wandering around the mall. Bewildered, because we will not be there to shop for children's clothes or toys.  In fact, shopping for anyone other than us is going to be forbidden.  Never one to pass up an opportunity to make a list, I have also compiled the following:

- We will bring at least $50 in "blow" money.  The legal kind.*

-We will not feel guilty for spending said money.  No talk of savings, tuition or home improvement projects.  For that day, we will be 16 years old again, with nothing better to spend our allowance on than frivolous things that make us feel good.

- We will do at least one thing that we will laugh about later, and probably be too embarrassed to tell anyone else about.  I don't know what it's going to be yet, but I'm sure an opportunity will present itself.

- There will be no talk of stressors.  No autism, no kids-not-listening, no I-can't-get-to-the-housework, no insurance woes, no work.  I'm not sure what that leaves, but we're going to come up with something or die trying.

- Cell phones = off.  I'm not sure yet which one of us is going to go into withdrawals first, but as an emergency plan, I am building in two minutes into every hour for EMERGENCY PHONE CHECKAGE ONLY.  This one may have to be put into writing.  And signed in blood.

The most important goal of this girls' day out is to let ourselves do something for ourselves without feeling guilty about it.  We will remember the times our husbands took time out to play video games, or wander around a hardware store for no good reason, or buy a game/shoes (yes, shoes)/man-toy without stopping to analyze the effect on The Family Budget.  And we will stop and realize that maybe this is one of the reasons they aren't stressed to the breaking point 23 hours out of every day.

Because when things happen, our families deserve us at our fully oxygenated, calm-and-with-an-emergency-plan best.  If it takes a spa pedicure to get there, so be it.

I'm going to get my Zen on, dammit.



*To anyone this may not make sense to, I am not, in fact, a drug addict.  Just to clarify.

This is what we wanted...right?

My breaking point and I, we are eye to eye these days.  We play this game of chicken, which would be funny, except it's not.  Some days I realize all the things I have to be thankful for, and I'm in a good place.  Other days, the Breaking Point starts breathing down my neck, and it all just seems too much to deal with, the decisions to be made too great in importance.  One of these days, possibly one day soon, one of us is going to have to give, even if just for a short period.  So far, it ain't me, although things are touch and go.  

We met with our school district, to get the ball rolling for Little C.  I already had a bit of a sinking feeling about how this was going to go.  His praise of late has been effusive among therapists and teachers alike, his progress impressive.  In our prior meeting with school district staff, they stressed that just because our baby had a medical diagnosis did not mean he would meet the criteria for an EDUCATIONAL diagnosis, necessarily.  He had to be evaluated.

And that's when I heard the whistling of that damn shoe starting its descent.

Yes, little man's progress has been out of this world.  When I think of the lost, confused, frustrated child of nine months ago, he seems almost foreign to me.  Now my baby is happy all most of the time, he speaks effusively, if not always clearly.  His frustrations come and go, but are generally manageable.  His therapists think he is the cutest, sweetest thing ever, and we are so proud of him.  Twice over the holidays, I heard someone proclaim, "If you hadn't told me he had a disability, I never would have known!"

But I know.

As much as it lifts my hopes to hear that sentiment, these are words spoken by people around my baby for short periods of time.  For every bright smile he gives them, my mother's heart bears the bruise of another time - an instruction given that is met with only a look of incomprehension.  For every word he speaks to show off to strangers, there are half as many times when a whine or tantrum is considered a perfectly sufficient form of communication for Mom.  These incidents are lessening, yes, but it is always - ALWAYS - a battle.  Nothing comes easy for my boy.  

Now that I am more involved in this community of ours, I hear stories enough to make me grateful - extremely grateful - that my child is doing as well as he is.  He sings the Itsy Bitsy Spider song, cries out "MOMMY!" every day when I pick him up, he will ask politely (and sometimes not so politely) for "milk, peas" when he is thirsty.  He has made a great deal of progress.

But he is still autistic.

This label will never leave him, I am convinced.  It may change as the years come and go - maybe coming with qualifiers, or descriptives that gentle the blow.  But he will always be affected by (or "have") autism.  He is a fighter, tackling each new skill put in front of him, but I cannot escape the feeling of helplessness when it is ALWAYS a learning process.  The things that come so naturally to other children are WORK for my boy.  And that's why I think he will need help for a good bit of time to come.

As we sat in that evaluation room, watching the educators carefully take their notes and smile with delight occasionally at something or other my little ham did, my husband and I were experiencing very different reactions.  He, filled with pride, listing off all the things little C had accomplished in a mere nine months, pointing out all his strengths and remaining positive about his weaknesses.  

Me?  I was proud, yes, but also weary.  For here was another battle presented to us.  My baby is autistic, but apparently not autistic "enough."  The skills he performed in that evaluation, the rudimentary questions he answered, all were hard won through nine months of hard work at intensive therapy, and at that end of that interview, we were told that little C did not qualify for services as things stood.  Nine months ago, I would have told you those words were exactly what I wanted to hear.  Now, they scare me to death.  He's in a great groove now, the shining star in his own little special needs universe.  But real school?  It's not anywhere near that universe, and without services, I don't know what to expect.  

It's hard to explain, this feeling of parental intuition I have.  The women interviewing my baby had doubtless seen many children all over the spectrum come and go, and they seemed confident in their pronouncement that he was doing, "So great!"  How to explain the feeling I get when he is mid-stream showing off a new skill, and then is reduced to abject panic when a motorcycle guns its engine on the street outside?  How he can list every letter in the alphabet, spelling numerous words, but cannot tell me about his day?  

He may have long stretches where he follows the "rules" of what he's been taught to do and can appear almost completely normal to an outsider - but who will understand that yes, he IS doing great...until he's not?  Our ultimate goal for him is to be functioning as a completely typical child, in a typical classroom, among typical peers.  But I worry, out of my mind at times, that we're just not there - YET.  

Our school system doesn't have the best track record for services, although it is not the worst among the parishes, so I'm hoping for the best.

Until then, there's just that Breaking Point and me.  Playing chicken.