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.

No better feeling

Yes, I've been a very negligent blogger lately. For those of you who may actually follow me (hi, mom), I apologize. Sort of. There's a large part of me that wants to let loose maniacal laughter at the thought of having time to blog on a somewhat predictable basis. But whatever. You get the sentiment, at least.

On to my so-giddy-I-almost-passed-out motherly moment of today. I showed up to pick up the little man this afternoon, and he saw me though the glass door of the center. He had to wait his turn, and I could see him getting visibly excited. No sooner did that door open than he came FLYING towards me, yelling "Mommy! Mommy!!"

Now, to the other 1/120th of the nation's parents, this may be a common occurrence, one easily taken for granted. But you know better, don't you? You know how my throat instantly went tight with tears, my eyes stung, my lip was determined to tremble. My baby has said that word before, yes, but this was the first time he really SAID it. Not in observation, not to label me--my baby CALLED for me. That one word said more than the casual observer could have guessed. It said, "It's you! You're finally here! I missed you. I love you. Now let's go home."

Joint attention/relationship skills, you've been a fickle biotch thus far, but thanks for finally showing up to the party.

Vacation From Autism

Since I've been a bit of a lunatic here lately, I figured I'd lighten things up a bit and take my lovely readers (all four of you) along on our autism vacation. 

As the husband and I have lately become increasingly fuzzy on who we are outside of our parenting/therapist roles, we decided we needed a break and were taking off on a getaway for two. Budgeting for a family with autism being what it is, it had to be cheap and local.  Since New Orleans has been synonymous with the word cheap in many senses of the word for years now, and it is just a short drive from us, off we went.

We had a plan.  Really we did.  It just kinda fell apart since we neglected to remember it was Veterans Day, and major museums tend to be closed on holidays.  Selfish bastards.

My husband grew up in New Orleans, as did my mother, so we are both familiar with the area--although neither of us had ever really played tourist in the city.  So, we winged it.  We stopped in a guide shop in the Quarter (just past Crescent City Brew House, which has a bar built right out into the street for curb side service.  No kidding.  It's not even the only one, they're pretty much everywhere), and picked up some brochures. 

Along our self-guided walking tour, we were trailed by aggressive pigeons.

I'm pretty sure this one stared me down and cooed "I will cut you."

We browsed some interesting vendors.

iJesus.  Miracle iPhone repair.  No, seriously.

Ate some fantastic food at this place.

Stopped at a few candy shops.

It's blurry, and Blogger is flatly refusing to rotate it, but this picture is a box of candy that includes the disclaimer, "Not for Weight Management."  Um, no kidding.  This is NOLA.

We watched some street performers.

These guys like to remain perfectly still until you've finished laughing at the gullible tourists for thinking these jokers are actually statutes, and then when you're leaning closer for a second look, just to make sure, they move and scare the holy hell out of you.
Crazy bastards.

Then we stepped into an appropriately snotty museum, where I reviewed my sweet southern belle culture.

Yep.  That's us, all right.

There were Zydeco dancers, and musicians.

Nothing says NOLA like dancing and singing in the street.  Except maybe hand grenades and garbage.  But whatever.

We marveled at the various quirky things to be located in the French Market.

A huge variety of hot sauces

 Wake the @#$%! Up coffee

Does this really need a caption?

The architecture and history were amazing.

 Ironwork.  It's everywhere.

As was the, er, food.

Yes, my husband managed to finagle sushi out of this trip.  Although the rolls to the left are Cajun rolls.

Then, night fell.  I'd kind of forgotten what a different world the Quarter is after dark.  We hung around to take a haunted history tour, and our group met up on the corner of Royal and Bourbon.  Bourbon, for the uninitiated, is at the heart of the Quarter, and is closed off to traffic every night by the local police, just for partying.  And by partying, I mean drunks, shady clubs, and street hustlers.  Don't get me wrong, we had fun sniggering at the drunks, but the hustlers made me realllly nervous.  The clubs I did my best to ignore.

Side note: when stopped by said hustlers, and they say, "Hey man, I can tell you where you got yo shoes at!" the answer will be, "You got yo shoes on yo feet, right here on Bourbon street!"  Sorry if I ruined it for you.  Just tryin' to save you a few bucks.  And your watch.

The haunted history was a ton of fun.  I mean, I can't say that I was surprised, but I had no idea New Orleans was the birthplace of the Mafia.  Or that doctors, and their wives, were so damned crazy back then.  It did, however, confirm my suspicion that Nicolas Cage is not, in fact, the badass he portrays in the movies.

  It was a solid two hours of walking all around and into the outskirts of the Quarter, peering into darkened windows and shooting suspicious glances up at deserted balconies.  We were all a little jumpy by the time all was said and done.  Although that may have had a little to do with the continued presence of the hustlers.  Those dudes are everywhere.

So, after hours of walking, and eating until I was pretty sure I was just going to declare a moratorium on the process for a while, we drove home, with our wallets still intact.  We were worn out, but had had an actual date for the first time in a long time.  

Turns out, that guy that put a ring on it?  I'm still kinda fond of him.  

After all, he was pretty badass with those hustlers.

Tactile memories

It's funny how tactile memories work.  I drove a route tonight that I have not driven since before we received Caleb's diagnosis, and I am still sorting through my emotions.

For just shy of the first two years of my little boy's life, I drove the same roads, every day, bringing him and his brother to their sitter so that I could go to work.  I have crystal clear memories of this time - of the very first day that I brought him, rationalizing that since I had been through this before with my first, this time it would be easier to leave.  It would be silly to cry.  Then I remember coming to the realization that my inner logic was a big fat liar, and crying almost the entire drive in.

I remember driving that route and glancing in the rear view mirror in those early days, marveling that now there were TWO little people back there that belonged to me, where just weeks before there had been only one.  As I soaked in the sight of those boys, I envisioned their future, and could hardly wait to watch them grow, filled with plans and dreams of what their lives would be like.

Then I remember traveling those roads, eyes blurry and throat tight with tears, thinking maybe it wasn't the best idea I ever had to decide to drive the day that I had to say The Word for the first time.  I had just finished choking out "Autism" to his sitter, trying to force the sound of it out of stiff lips, attempting to explain to her what I had yet to understand myself.  Unable to make eye contact, because the thought of seeing pity on her face was crippling to me.

As I drove those roads again tonight, I felt an odd sense of grief, feeling the presence of the ghost of that former self of mine.  Looking back at how hectic I thought my life was at the time, I can't help but wish that I could be as carefree now as I was when I only thought my life was hard.

It's getting more difficult as he gets older.  Tonight there was a little girl there at that gathering, just weeks older than my boy, and looking at her almost physically hurt.  She was bright, she was bubbly, she was beautiful; but how to explain that every sentence she uttered made me catch my breath at the realization that the gap - that horrible, yawning gap - was widening?  Every day, something my baby does that is a huge accomplishment for him becomes more and more commonplace for his peers.  Skills he lacks that before could be attributed to youth become more glaring as he ages.  Speech is now old hat for that bright, effervescent angel, and she is moving on--leaving my little man in her wake.  He is improving, day by day, but will that ever be enough?  I know he has to travel his own path, and that path is not mine to map for him, but it's so hard to let go, to not be able to "fix" this for him.

So I resolve to take a deep gulp of air, and catch my breath, one more time.  To start over tomorrow.