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.

Halloween--autism style, y'all

The center Caleb attends for therapy hosted a Parent's Night Out last night, and the kids all went in costume.  They practiced Trick-orTreat-ing, got their faces painted, and generally made themselves sick on junk food.  In short, they had a BLAST.  

In a rare moment of creativity, I put a unique spin on Caleb's costume.  As I've previously discussed (or lamented, depending on your point of view), he's a tad obsessed with letters, specifically the letter "R," for whatever reason.  So my baby went as a pirate.  Because pirates...well, pirates say "R."  :)

^Holding his R and squawking like the real deal

 ^Pirates also wear "I" patches

Go ahead.  You can say it.  I have the cutest kids EVER.

Letters, Letters, Everywhere

We had another funny little moment yesterday, a moment that is uniquely autistic, but no less endearing.

I believe I've mentioned this before, but Caleb has a thing for letters.  Yet again, as criteria goes, it's a tricky thing, these letters - medically, he is not officially "fixated," but he comes darn close.  He does not stare at them for hours, or line them up, or refuse to play with other toys in favor of them.  They're just his favorite thing.  Ever.

On my good days, I liken it to a typical 2-year old having a favorite bear, or toy TV character.  You know, the little boy who refuses to part with his Toy Story Woody, or the girl who just can't leave home without...whatever little girls won't leave home without.  What do I know?  I have all boys and barely remember that I myself am a girl, some days.

On my bad days, I worry.

While most 2-year olds chatter happily about what they did in school that day when being picked up, mine is focused on pointing out the "R" on the nearby sign to me.  He's always very good about engaging me - his little eyes stare in to mine, WILLING me to share his excitement in the letter "O" he has discovered lying on the kitchen table in a stack of mail.  He even points, his small and adorably chubby finger almost demanding in its insistence.

For the most part, the letter thing doesn't pose too much of a problem.  He can be redirected, distracted, engaged in a toy or with playing with his brother, and is content.  Some days, though, I just have to accept the fact that yes, he is capable of telling his sitter "bye" in the evening, but he will not do so until I acknowledge that yes, baby, I know you have sighted a B.  It's a very nice B, as a matter of fact.
Once given his due, he happily chirps his "bye bye" and we go along our merry way.

There are also days I just have to outright laugh at the situation.  Case in point:

We are driving home after being picked up from therapy.  Caleb has said goodbye to his therapists, been loaded into his car seat, and managed to stealthily remove one shoe and sock (I say stealthily, but as he has taken to narrating these types of things in his abbreviated way, I may have pretended I didn't know, for his benefit).  I stop at a red light, and turn around to enjoy a minute of engagement with just him, no one else.  With our hectic schedule, these moments must be seized and savored.  I smile, make a goofy face.  "Hey, baby," I say.

He smiles back, and something in the movement of his head makes him catch it.

There is a label - a WARNING label - surgically attached to the head rest of his car seat.  The same car seat, incidentally, that he has been riding in for over a year now, just about every day.  For whatever reason, the label has heretofore gone unnoticed.  And present in that label?  That's right - letters.

The look on his face is priceless.  I wished, in that moment, that I could bottle it, tuck it away to relive and giggle over again and again, later.  It is a look of stunned amazement, and for a moment, he is at a complete loss.  I can see his mind churning, processing what he sees, working through what to do first.  Finally, he settles on shooting me a look that clearly says, "WHERE HAVE THESE BEEN, AND WHY DIDN'T YOU TELL ME THEY WERE HERE?"  Then, switching gears rapidly, he tumbles into excitement, nearly running out of oxygen before he can remember to take a deep breath before bursting out in a jubilant refrain, "W!  W!  W!"

For the first time in a while, I let go of the niggling worry, and let myself enjoy the sound of a letter - and I laughed all the way home.

Taking a Moment

I've learned many things in the last six months since we've received our ASD diagnosis.  One of those things is how NOT alone I am in this.  The statistics on those affected are mind-numbing, and just about every day I talk to or read the blog of someone parenting on the spectrum.  It's humbling hearing so many of their stories, and it reminds me of just how broad this spectrum is.  As bad as some of our days can be, there are others who are so much worse, those for whom good days are few and far between.

So tonight, I am grateful...

That we have more good days than bad.

That we have never received a recommendation from a doctor, and known we have no way of implementing it.

That although seizures affect as many as 40% of those with autism, I have never had to hold my child in my arms and wait helplessly for convulsions to subside.

That although autism still does not receive the awareness it deserves, we have a doctor who was proactive enough to get us started on the path to diagnosis early--and it made a difference.

That when I drop my child off at his therapy center three days a week, he is so excited to see the therapists that I worry he will break his neck, scrambling out of my arms.

That those same therapists are nearly just as excited to see him EVERY time, and they cannot wait to run down a list of funny and amazing things he did at the end of the day.

That although I still worry --every single time--about where the money will come from to pay for that therapy, it is somehow always there when I need it.

I am thankful that my baby has two amazing big brothers that he absolutely cannot get enough of, and a father who is indescribably amazing.

That although his speech is slow in coming, it IS coming, and not a day goes by that I don't treasure every word he utters.

That unlike so many parents whose childrens' voices are locked inside them, I have heard my child utter the words, "I love you."

That as clingy as Caleb can be at times, he SEES me--and few things make him happier than snuggling in my lap (albeit with his favorite letter in hand).

So, here's to more good days than bad.

The Talk

Caleb's ABA center hosted a parent's night out function tonight, designed to help the kids practice socialization with each other and with their neurotypical peers.  Well, I say parent's night out, but since my husband was out of town, it was more of a Mommy-is-out-of-the-social-loop-and-spent-the-night-at-a-coffee-shop-with-a-book kind of night.

Anyhoo, this was to be neurotypical Colby's first real experience with other ASD kids, most of them exhibiting more apparent symptoms than his brother.  I went back and forth on how to handle this.  Do I let it ride, and treat it as normally as possible?  Or do I give him a list of potential scenarios, and risk making him nervous?  In the end, I decided I was thinking too much again, and left the kids in the very capable hands of Caleb's therapists, figuring we'd take it as it came.

So, I got a few hours to myself, and they got enough junk food, toys and stimulation to put them in a Fisher-Price-induced coma.  It was a win-win, in my opinion.

When I picked the kids up, they were pleasantly exhausted and had had a great time.  Colby babbled on about colors and cookies and chalk boards and popcorn, and when I could get a word in, I asked him about the other children.

Did you play nice with them?  I asked, cautiously.

After a swift response of "yes," (his sense of self-preservation is remarkable at such a young age) he paused for a thoughtful moment.  He then told me matter-of-factly that one child was "bad" and had "hit."  It wasn't entirely clear who the target of the hitting was, but since I'm sure Caleb's therapists would have told me if there had been a problem, I assumed the hitting was self-inflicted.

I drew a deep breath.  We'd talked to Colby before about his brother being different--even using the term autistic--but couching it in terms his 3-year old mind could understand.  To him, autism meant having trouble learning to talk, and not liking certain noises, which are his brother's main symptoms.  Apparently the time had come to shed a little more light on the subject.

In carefully chosen words, I explained to him that some kids with autism did things that may seem bad, but really just meant that they were frustrated, or scared, and they couldn't help it.  Some things that he may think were "bad" or "weird" were really just another child's way of making themselves feel more comfortable - like Caleb holding his ears sometimes.  I then went on to tell him that it was our job to be patient and kind to people who were different, and to always think about how we might feel if we were them.  It was important to always treat other people, especially special people like Caleb and his school friends, how we would want to be treated.

There was silence from the back seat, and I braced myself for the questions, praying that I would be able to find the right words.


Okay, Mom, my little man said, eyes locking onto the in-car entertainment system.  Can I watch a movie?


Maybe he wasn't listening to a word I said - this is possible, but the quality of his silence was a little different tonight.  Believe me, I know the sound of being ignored.  I'm pretty convinced he heard and absorbed every word I said, as he usually does in that scary way of his.  At his innocent age, and in the absence of judgmental "friends" and bullying peers, I think he simply accepted my words as truth, and thought nothing more of them.

I pray to God his acceptance is always that pure.

The sweetest word

There have been many things that I feel we have missed out on, since my little boy was diagnosed with autism. For the most part, we have stayed busy and proactive and have not had time to dwell on them much. Finger pointing - eh, not such a big deal.  Baby babble - no biggie, we can work on it, he'll catch up. The list goes on, but one thing that has really bothered me - really made my heart just hurt, as a mother - is not hearing my baby say "Mommy."

Now that his speech is picking up, he verbalizes all the time, pointing out letters and numbers and various inanimate objects galore. And, if you ask him to, he'll say "Mommy", but only as a manner of rote. He repeats it, nothing more. Maybe it shouldn't bother me - after all, the relationship is the same. He still runs to me the instant he needs something, or just wants to be held. He loves me as much as any typically developing child would love their mother. Yet that doesn't keep my heart from breaking, just a little, when I pick him up from the sitter's house and other children run toward their mothers, exclaiming "Mommy!" happily.  My baby is glad to see me, and his chubby little face stretches in a smile, but he is heart-breakingly mute. Unerringly, I find myself silently coaching him on those sitter-days.  Just say it, baby, I think.   Just once, for me.

But he doesn't.

I don't really know how to explain the lack, there - he knows who I am, he will look for me if my husband queries, "Caleb - where's Mommy?"  He just doesn't say it.  He'll light up and run for his favorite letter, chirping "R!" merrily as dashes by, but for whatever reason, "Mommy" has fallen by the wayside.

I remember him, as an infant, saying Da-da and Ma-ma.  I recall how smug my husband was that he said Da-Da first, and how we laughed about it.  There was never an abrupt loss of speech with Caleb, as there is for so many ASD children.  He just said the words very sporadically, and only when prompted.  I can't pinpoint when even that stopped, but it did.  Sometimes I look back at those words, at how brief they were, and mourn them - I never realized how precious they were.  I would have been miserable at the loss of speech either way, but perhaps if there had been an abrupt cessation, I'd have known something was wrong then.  Those precious syllables would have been fresh in my mind for at least a brief period of time, instead of the very gradual fading that leaves them a faint and distant memory now.

His therapists say it will come - we're focusing on bigger things now, hurrying to take advantage of his youth and eagerness to learn.  I know these things are important - building his vocabulary and social skills and appropriate toy play are all going to be essential to our all-important goal of Mainstreaming.  I get it, I do.  But at the same time that I find myself growing exasperated at hearing "MommyMommyMommyMommy!" a hundred times a day from my four-year old, despite my heartfelt threats to change my name to Bob at any given moment, I still would give anything to hear it from Caleb.

It seems so small, in the grand scheme of things.  It's not like he's never going to say it - it just breaks my heart to think of him being unable to call for me.  There's something elemental about that - what parent doesn't sleep with one ear cocked toward their child's bedroom, always on the ready for that plaintive sound?

But it'll come.  Just like the play skills and imitative learning and the now-approaching-massive vocabulary have come.

I just kinda hope it's soon.

Genetics

I've been thinking again here lately.  I know--bad habit, I desperately need to cut back, as it most often leads to (more) worry and stress.  But I am, at the core, a thinker, and I can't help but over-analyze things.
Some day, hopefully one day soon, we'll know what causes autism.  Hell, if Apple can develop a new iPhone every six months (even if they can't manage to hold onto it), some scientist some day is going to figure out what makes our babies tick.  Maybe it'll be something environmental - teflon, or gluten, or freaking green peas, for all I know.  I myself am more inclined to think it's just plain and simple genetics, or some combination of factors.  I'll tell you why.
Kids in my family have always been a little weird.  Me being a case in point (insert snarky comment here).  We were always a little slow to develop physically, but I was also a little quirky in the mental department.  I still hear stories from relatives about how I could "read" at two years old.  It wasn't so much actual reading as memorization, of every single word I saw, once it was pointed out to me.  When I was still a toddler, I was reading billboards from my car seat, riding down the highway.  This in combination with being a wee tiny bit socially awkward makes me wonder, now. 
I am seeing this same behavior (minus the social awkwardness) in my 4-year old.  Case in point, he literally sat down and read me a book which he had had read to him a max of three times (and hadn't seen in at least a month) the other day.  While his class has plans to start working on the building blocks of reading later in the year, he has not had any sort of formal training as yet.  Needless to say, I was floored. 
Suddenly, things started clicking.  He had always been very smart, learning his letters at eighteen months, his numbers by nineteen.  He was slow on his physical milestones, but far outpaced others on the mental ones, learning the lyrics to songs and dialogue to movies after just a few viewings, learning every sign on the Signing Time DVD after only a handful of viewings.  And all of this was self-driven.  Although I've known a few moms who were grimly determined to make their children into little prodigies, I was content to just let mine be - he had the rest of his life to learn.  Yet, with very little effort, my child's brain is developing in astonishing ways, at an amazing rate.
People remark on how lucky I am, to have such a smart child. Me, I'm terrified.  Everything comes so easy for him, there doesn't seem to be a learning curve.  Instead of remarking on the pictures on the walls of the pediatrician's office, he wants to discuss the anatomy charts.  He remembers driving routes after only one trip to a particular location.  How do I keep up with that?  Am I stimulating him enough?  He's a social butterfly now, but how long before his intelligence affects his relationship with his peers?  How will he relate as he gets older?
Don't misunderstand me, he's not doing calculus or composing Nobel worthy works of literature, by any means.  I think he is more than capable of living a "normal" life, but I worry - alternately about him not reaching his full potential because he will try to "fit in" with his peers, and that he will exceed -  potentially always regretting being different.
Maybe I'm being selfish, worrying about this - plenty of people have bigger problems than too-smart kids.The worry is mostly for me, I think - it certainly doesn't do my children much good, but it makes me feel like I'm doing something for them, at least, when there's so little else I can do.  When it comes down to it, the hard work is up to them. 
One of these days, I'm going to have to let them go, and pray that whatever they are - ahead, behind, social butterfly or recluse - that they'll be happy about it. 

Just so much

It's amazing all that can happen in a week, even more amazing the array of emotions one person can experience in that same week.  By turns, I have felt worry, triumph, fear, sadness, joy, loneliness and gratefulness; each emotion leaving its own little footprint behind in its wake.  In watching my baby change, day by day, I feel as if I am changing just as fast, no longer the same person from one moment to the next.

Just a short time ago, I thought I was strong.  I juggled work, caring for three children, household chores, and working in time for that man in my house whom I happen to love quite a bit, known as my husband.  My biggest problem was how best to save for Christmas, my biggest worry that my 3-year old was getting spoiled with too many sweets at his grandparent's house.  How distant that person seems to me now.

In the past week, there has been much coverage of the 9/11 tragedy - most of which I am unable to bring myself to watch.  I tell myself that I owe it to the memories of those fallen that day - to hear their stories, to cry for them, to grieve with those they left behind.  To marvel at their courage and the massive, senseless loss of life.  For these reasons, I'll probably pick the longest, saddest, most sob-inducing prime-time special to watch, and watch it I will.  I will cry until I ache, and afterward I will hug my babies and my husband, and I will be grateful they are here to hold in my arms right now, in this moment.  Then the next day, I will get up and think of other things, get a little distance on it again, until next year rolls around.

It occurs to me that there are some parallels here, for me.  I was young when those towers fell, and I still remember the feeling that the event had created a Before and an After in my life.  We had never experienced a terrorist attack, so in our reality, the threat did not exist.  When flying, our baggage was checked, but only cursorily.  Pocket knives were an essential tool a good southern boy was rarely without, not a potential instrument of death, and strangers were simply people we hadn't met yet - not people who might be expected to kill themselves, and us, in the name of a god for whom peace would never be good enough.

Another Before and After was created for me on March 1st, 2011, when my baby boy was diagnosed with an autism spectrum disorder.  I look back at the person I was before that day with mixed emotions, wondering that I could have been so blind, so naive to think that because I had already survived so much, worked through so much in my short life, that no other demons were lurking around the corner.  Surely I was golden, right?  Surely I could not be expected to conquer MORE than I had thus far, right?  I imagine God looking down at me that day and responding with an emphatic, "Yep."  And maybe those previous struggles, that previous survival, was the reason for that answer of His.  Maybe God could have given that earth shattering diagnosis to anyone, but He chose me, because He knew I could take it and run with it.  He knew that of all the mothers in the world who had been, were and would be in the future, I was Caleb's best shot.  He was going to need some backup in moving those mountains of his.

So if I could go back to that day and say anything to myself, it would be, "It's going to be okay."  Six months ago, I don't know if I would have believed myself.  At that point, I was so mired in panic and worry and denial and confusion, I don't know that I would have even paused long enough to listen.  I wish I could have told myself that six months to the day from that first neurologist visit, I would be back in her office again - (slightly) more educated, calm(er) and bearing progress charts. PHENOMENAL progress charts, as a matter of fact.  My baby and his therapists worked hard for every bit of achievement represented in those little colored squares, and I absolutely could not be prouder of any of them.

No, Caleb was not pronounced "cured", but he sure did put a smile (okay, an approving look) on that doctor's face, as well as that of every therapist that had worked with him.  I'm half convinced THAT group was more excited about his neurologist appointment than we were.  The official diagnosis was kept as PDD-NOS, but the prescription was simply, "Keep doing what you're doing.  Don't change a thing."

We couldn't have received a better one.

T minus 2 days until we see the neurologist

So we see the neurologist Thursday, and I'm torn between excitement and hyperventilation. Excitement because we got a REALLY positive report from his therapist last night and hyperventilation because, well...I'm me. There's really only so many ways around that.
On the night in question, I, in my OCD, over-preparedness mode, emailed Caleb's therapists to inquire if I may, perhaps, be able to obtain a suitably impressive chart or graph to present to the good doctor to prove that I am not hallucinating Caleb's excellent progress. Shortly after, I get a call from the director, who is genuinely excited about my email and promising to evaluate him the day before his visit because she REALLY wanted his doctor to see these results. She started talking conceptual thinking skills and milestones and I was hearing phrases like, "I don't think we've ever had a child make so much progress, so fast" and my eyes started blurring. No, not from terminology overload (this time), but from tears. My baby was FLYING through his protocols left and right. I have never been so overwhelmed with pride and pure, unadulterated gratefulness. I think of all the nights I lay in bed, feeling broken and BEGGING God to spare my child, to reconnect all the nerves and synapses that had somehow, somewhere gone awry. "I just want him to be OKAY," I agonized. Billionaire or bum, I just wanted him to live a normal life and be happy. For the first time last night, I could see that coming. For the first time since all this started, I felt it may be, just possibly, okay to take a breath. I don't for a second think that he is "cured", but I caught a glimpse of what he is capable of, and it is AMAZING.

My boy--my sweet, lovable, courageous boy--he will move mountains. And he will sketch an elegant bow when he is done.

In Which God Laughs at Me

I came to the birthday party prepared.  I was kinda psyched to have a party to which I just had to show up and not have to plan out every detail, buy food, clean house, cook food, clean house again, then rush around doing everything I forgot to do just after everyone arrives.  Then, after the party, clean again.  That said, it should have been relaxing to go to a party place, only needing to make the cake (which was pretty rockin', by the way.)

Yes, I do them on the side.  Call me. Therapy ain't cheap.

But, as previously blogged, I was nervous about how Caleb would do.  All I could think about was the times we had gone to friends' houses, or family gatherings, and how anxious he had been.  I was convinced he would not do well at all, so I came prepared - probably more prepared than if I'd done the party at our house.  I had the iPad, loaded with his favorite videos and all sorts of letter games.  I let him bring in his foam letter "R" that he'd sneaked into the car with him, crafty little thing that he is.  I lectured myself: "Self, this is good for him.  He's never going to learn how to deal with social situations unless he's exposed to them."  I had his therapists on speed dial.  I had emergency chocolate stashed in my purse.  I was READY.

I was a MORON who worried for nothing.

We walked in and he was instantly fascinated by everything in the place.  He wandered from place to place, investigating toys on display, cabinets, anything he could get to.  "Well," I told Self, "No one's really here yet.  I don't know that he knows what's going on."  

So people started arriving.  The first few were people he didn't know, and I held my breath.  "Hey Caleb!" the first mom said brightly.  What did my baby do?  Smile and make eye contact and say "Hi!"  (Okay, it was more like "hoy", but hey.)  The eye contact was brief, and he was soon busily getting into other things, but I was stunned.  NO anxiety whatsoever.  Not even as more people arrived.  He smiled at just about everybody who walked in, and even mugged and showed off for a few family members.  When the party started, he sat on his dad's lap and played with the iPad briefly, but mainly wanted to get down and wander around - just like every other 2-year old I know.  Between busily taking pictures with my cell phone, having forgotten my point and shoot (guess party experiences can't be THAT different from year to year), I watched Caleb.  My chest tightened when at one point, the instructor had the kids put their arms in the air and wave them - AND CALEB FOLLOWED SUIT.  It required a little prompting from his dad, but he did it, and he got into it.  He was watching the other kids, which is monumental.  Now, he did whine a bit since he was hungry and the party ate into his nap time, but he was typical-two-year-old whiny, not autistic tantrum-y.  When he was ready to go, he let us know.  "Bye.  Bye.  Bye," he chirped.  This in itself is amazing - he was letting us know, loud and clear, what he wanted.  I was so, so proud of him.  The few times he needed a little extra attention, my phenomenal husband took care of it so I could concentrate on Cade.

As I settled the bill with the owner of the place, Caleb wandered in the office, still telling everyone "bye."  The woman made the comment that he was a little chatterbox and compared him to her young grand-daughter, who was not interested in talking at all.  I let her know that Caleb was autistic, and had not spoken a word up until about 4 months ago, and how proud we were of all the progress he had made.  The look of surprise on her face was priceless.  When she asked if he would give her a high five, I told her yes, and she asked him for one. My baby ran over this complete stranger and gave her a huge slap on the hand.  I know this sounds like a little thing, but this child could not follow a single command just a few months ago, so this small gesture was the icing on the cake.  

So, in conclusion, I think God is laughing at my panic.  Every time I get myself good and worked up, something wonderful happens.  My kid was great at this party, my big boy had a blast (and came home with reasonably parent-tolerant toys) and my teenager tolerated it admirably.

And I didn't have to clean.

Amen.

A Race to a Meltdown

Maybe it's the fact that my house is a wreck.  Again.  Maybe it's the fact that I have been getting very little sleep, even less "me" time, and not eating well.  Maybe it's the fact that I haven't had chocolate in, oh, about 6 hours now.  Maybe (probably) it's the stress of planning my 4-year old's birthday party and worrying how my autistic 2-year old will deal with said party.  It's probably a combination of all these factors, along with the ever-present financial concerns of therapy, but I just feel DONE tonight.  As high as the highs are in this whole experience, the lows are just as extreme.  I guess it's the nature of the beast - as no two autistic individuals are the same, neither are two parents of those autistic children.

I wish I could be one of those people who look at the situation as simply the way things were meant to be, and deal with it as it comes.  We all know that mom, right?  What I like to term the Michelle Duggar (bless her heart) mom.  The woman who always has a smile on her face, who ALWAYS uses her patient, loving "inside" voice to impart sage words of wisdom and guidance to all God's children, including the twenty or so (I'm counting the husband) she calls her own.  Contrast that with my method of patience, teeth gritting, more (slightly less patient) patience, stern warning, time-outing, attempting-to-explaining, releasing from time out-ing, exasperation, MORE time-outing...well, you get the picture.  And this is just the method I use for the husband (okay, just the 4-year old, but they're remarkably similar).  All of this while eyeballing and analyzing every move the 2-year old makes, keeping up with therapy methods, getting our oldest settled with school, etc.

I feel like the worst parent in the world for admitting this, but I'm kind of dreading my big boy's birthday party.  I'm looking forward to it too, but that's mostly why I'm dreading it.  In my grand plan, my little boy (who's not a baby anymore, even though I'm trying not to think too hard about that) has a perfect day, with all of his best friends coming, getting the perfect mix of kid and parent-friendly toys (I hate you, Play-Doh) and his Mommy and Daddy being able to make this day all about him.  In reality, although his little brother loves him to itty-bitty pieces, Caleb will probably take one look at the large-ish assembled group of people, another at the unfamiliar surroundings and lack of his favorite distractions, and commence freak-out mode.  Usually, this involves him planting his hands firmly over his ears and clinging to me tighter than one of Snooki's dresses, throwing in a distressed whine now and then for good measure.  So, I'll probably spend the length of the party watching Cade from the sidelines, trying to do anything I can to distract and/or settle Caleb, and worrying about everyone else's reaction to his behavior.  The attendants at the party will attribute his crying to just another spoiled toddler with an ineffective parent, and I will feel miserably guilty for not being able to give Cade all the attention he deserves.  My husband will do everything he can to help (including attempting to soothe my nerves), but in meltdown mode, only Mommy will do.  With all the progress he's made, all the FANTASTIC things he's doing, outsiders will see him only as that little autistic boy, poor thing.

I don't know why this situation will be different than the other night at the car dealership, but it will be.  Maybe it will be the smaller space of a party-venue, maybe it will be the fact that he's familiar with these people--they are not just strangers passing by, but people who love and care about him, and will therefore attempt (with the best intentions imaginable) to interact with him when he is NOT in the mood.

Maybe I'm over-thinking this.  I hope and pray that everything will go well.  We're on a roll here lately, right?

I don't think anyone's told this kid he's autistic.

We bought a new vehicle tonight, a combination of necessity due to the crap-mobile's sudden strut failure and a small financial miracle, thank the good Lord. These past few months have been very humbling for me - I am a person who likes to have a detailed plan at all times, so surprises and learning to roll with the punches has proved difficult for me. But every time I've gotten really, truly, frantically-searching-for-Prozac stressed, something has worked out, as in this situation. In church, we were always told, "Let go, and let God.". That sentiment has echoed in my head quite frequently lately, so that's become my new goal, mentally referred to as "Shut up and take a back seat already."

So, off my soapbox and on to our experience at the dealership. Naturally, Mommy was fraught with nerves, thinking of all the things that could go wrong with Caleb along. This trip would be challenging with an average 2-year old, much less an autistic one. I watched anxiously as we entered the brightly lit showroom, were greeted by the strange salesmen, and were surrounded by unfamiliar noises. My kid's first words? "Down!" (Okay, fine, it was more like "Dow," but you get it.). He rushed around, getting into this and that, and for once did NOT want me to hold him, which was a welcome change from his recent clinginess. Random strangers spoke to him, and he LOOKED UP AT THEM, and they ruffled his hair and he DID NOT CRY, or even act like he minded. He made eye contact, and looked to us for a reaction when something unexpected happened, and I kept thinking, "Doesn't this kid know he's autistic? He's not supposed to be doing any of this.". I flashed back to buying another vehicle at the same dealership when Cade was the same age, and Caleb was acting the exact same way as his big brother had in the same situation. It amazes me, the progress he's made, but it also involves some other mixed emotions. I wonder, if he doesn't "qualify" as autistic, what IS he? What else is going on? I get so excited with new skills he picks up, and then I hit the doldrums when someone else with a child the same age talks of having a conversation with their child and them comprehending and I know Caleb is not capable of that as things stand. I almost feel guilty when I hear of other autistic children having much more serious issues then Caleb, but then I also feel isolated around the other, neuro-typical kids his age. It's very odd, being in the middle.

So, while I'm very proud of Caleb, some days I'm still terrified for him. Who am I kidding with "some days?". I'm terrified EVERY day. But I was so, so proud of my baby tonight. My little schitzautistic.

Changes

I've been brooding a bit this weekend.  I know, shocking, right?  I had a huge high with Caleb's recent evaluation results, and then I got a little thrown off by something he did Saturday night.  One of the positives of Caleb's situation is that he's a little atypical in a lot of ways.  I feel a little guilty sometimes, reading about the struggles of other parents, when my son presents little of the most common major problems.  No rocking, no head banging or self injury, no screaming fits, no rigid attachment to schedules.  But as much of a blessing as it was to catch his condition so early, it was also a curse, in a way - I don't know what to expect.  Being so young, he's still unaware of a lot of things, so who knows what may become a problem and when - and how he'll deal with it when the time comes.

We have a mat that we put down on the bottom of the kids' bathtub to keep them from slipping, which I take out once a week to wash (Side note: Silverfish: Creepiest.  Things.  Ever.)  Anyway, the mat was being laundered at bathtime, so we had to do without.  The minute Caleb saw the tub, he started crying.  Covering his ears, and crying.  And my heart plummeted.  I knew it was the lack of the mat that had him upset, and it was such a helpless feeling.  My head told me to calm down and power through it - he was never going to understand that change was okay if he was never faced with change and allowed to deal with it.  My heart wanted to run into the laundry room and rip that stupid mat out of the still-running machine.  Still another part of me reminded me that hey, my kids are quirky.  My 3-year old was terrified of my mom's garden tub until he turned 3.  Literally, it was like trying to bathe a cat in that thing.  Maybe my kids have some sort of fiberglass bathing instrument phobia.  It's possible, right?  TLC is in the business of outing people who do weird stuff all the time!  My kids are positively bland in comparison to some of that stuff.

Needless to say, I steamrolled through the bath, sans mat.  Once we were out of the tub, he was fine.  But I spent the rest of the weekend fretting.  He'd never shown any attachment to schedules or routines before.  Should I expect more of this?  We are not schedule oriented people, really, so he'd been faced with change plenty of times before.  What set this off?  Why now?  Should I have handled it differently?  Where do we go from here?  Why can't I stop THINKING about this?

My son's therapist likes to tell me when I get worked up about something he's doing, that kids are WEIRD.  Take the average class of 2-year olds and an ABA therapist is going to want to treat at least 1/3 of them.  They just do strange things, and kids on the spectrum are no different - just because it's weird, doesn't mean it's necessarily ALWAYS an autistic behavior.  Luckily, I remembered this the next night when I bathed him again, and I was encouraged to see that his reaction was a little different this time when I deliberately left out the mat.  He did not react at all when he saw that the mat was missing, and when I put him in the tub, he clung to the side like he was petrified of slipping.  He whined, but did not cry or hold his ears, although my poor baby did NOT look happy with me.  So, I calmly told him to tell me "mat", and once he did, I replaced the mat in the tub.

Look at me, acting all rational-like.

I don't know if this was a true autistic behavior or not.  He's had a lot of behaviors that have started out autistic but that he's learned to cope with in a very un-autistic way.  Case in point: he cried and held his ears the first time he heard my blow-dryer.  The second day, he held his ears and stared at it from across the room.  The third day, he stood next to me, held his ears, and glared at it.  Now he's not crazy about it, but has decided that it poses him no ill-will and will dart past it if he needs something badly enough.  Otherwise he avoids it, but it does not seem to distress him.

For the most part, I am very, very grateful for how well he is doing.  It's easy for me to not sweat the small stuff when I read stories such as Lost and Tired's (www.lostandtired.com) and I ache for what that family has been through, and is still going through.  As I hold my babies in my arms, I think hey, I can deal with quirky.  If the biggest problem we have is needing to make sure the bath mat is down at all times, we're doing good.  But when he's holding his ears and crying and I can SEE the distress on his face, I want to stomp my foot and throw a plate like Richard Dreyfus' wife in Mr. Holland's Opus and scream, "I. CAN'T. TALK. TO. MY. SON!"  I want to know WHY he's so scared of groups of people, and missing bath mats, and the stupid marching band song on Bubble Guppies.  I want to be able to ask him what's wrong and have him TELL me, like other 2-year olds.  While his communication has come a long way, if he's really upset, he looks at me with this anguished look on his face and just cries.  Yes,  he is learning to communicate, but it does not come naturally to him.  When he's that upset, the only language he speaks is that of tears, and it breaks my heart.

These episodes come few and far between, but will they always, I wonder?  He's improving rapidly with therapy, but can I expect the problems to ever be truly solved?  There's still so much ahead of us - school, friends, birthday parties.  Thinking about it makes my chest tighten with worry, so I try to focus on the numerous GOOD things he's done lately, instead of the bad.

Okay, now that I've gotten my brood out, I'm going to catch up on Big Brother.  Don't judge me.

Great Day in the HOUSE!

Okay, I know it's been a while since I've posted.  I could offer all kinds of excuses, but the bottom line is that a) I'm lazy and b) my life is actually kinda boring.  Plus I'm studying for kind of a big-deal test which I will hopefully be taking within the next few weeks.

Okay, fine, I just cracked the book today--but crack it I did!

Anywho, onto the blog post, which is, incidentally, what I'm here for.  Last week we got some GREAT news regarding Caleb's progress in therapy.  His ABA program puts "protocols" on him periodically (I'm learning all SORTS of new terms here lately).  Basically, they teach him new skills and monitor his progress on achieving them, including everything from imitative and play skills, to verbal communication and everything in between.  Well, my little super-munchkin "mastered out of" SIX in the last month.  I have no frame of reference, but I'm assuming from the director's tone of voice in imparting this information that this is GREAT!  They re-evaluated him and he is testing WAY higher on the little graph-y thingee than he did when he started, which puts his scores falling "primarily in the appropriate level for his age."  I was FLOORED when she told me this.  I just couldn't be prouder, or happier that we made the decision to get him early, aggressive therapy when we did.  It's been a long and scary road, but it's SO encouraging to see progress.

I had a conversation with Caleb's sitter today (he's in ABA three days a week, and goes to an in-home sitter for the other two) that was very encouraging also.  She went on and on about how much progress he's made, and what a different child he is now after just three months of therapy.  "He's just so HAPPY now," she told me.  During what I now refer to as The Dark Time Before Therapy, he had a lot of problems at her house, staying mostly unhappy and mute, crying for long periods and not interacting much.  I struggled with a lot of guilt, knowing he was a trial for her, but not knowing what else to do since the alternative was a standard daycare setting, in which I KNEW he would struggle even more.  She made a comment that almost made me cry (okay, fine, I did--but not until the drive home).  She said that the other kids, all under three, had noticed there was something not right with Caleb, and when she would try to get Caleb to say something, they would tell her, "Caleb can't talk."  That broke my heart to hear, to know that children hardly more than babies had noticed that there was something different about my little man, when it had taken me so long to accept it myself.
Now, the same children never say things like that anymore and look at him as more of an equal.  One little girl even waved to him today, cheerfully calling out, "Bye, Caleb!" as her mother and I loaded our respective children into their car seats.  If I hadn't seriously considered the possibility that her mom would have been slightly alarmed at my actions, I would have run over and kissed her.  One of the (many) things I have worried about is the possibility that Caleb will never have any real friends - that he will go through his life a solitary soldier, coping with but never really enjoying life to the fullest.  What fulfills a (typical) person's life but people and human interaction?  I was just learning to accept the possibility that my idea of fulfillment might not match his and that that was okay, when this happened.  One little smile and wave from a curly haired little moppet, and hope was born.

Because Caleb, my little MIRACLE, smiled back.

Things I Wish My Autistic Child Knew (Totally Ripped Off)

Shout out to Rob at www.LostAndTired.com for this post, I had to pass it on.

Things I Wish My Autistic Children Knew

1. I’m sorry I have fits, but I’m not a spoiled brat.  I’m just so much younger on the inside then I am on the outside.

2. I’m easily overwhelmed because I see and hear everything.  I hear the lights hum and clock tick. Everything is so loud it makes my head hurt all the time and my eyes hurt from all the bright lights.

3. I’m not stupid, I’m actually very smart. I just don’t learn the way you want me to. Please learn about Autism so you know how to help me better understand what you are trying to teach.

4. Please don’t be mad at Mommy and Daddy because we don’t come over for holidays or birthdays. They really want to go but I don’t do well at another person’s house. It’s too overwhelming for me and they know that. They don’t go because they love me, NOT because they don’t like you.

5. Please have patience with me. I try really hard to make good decisions but I can be very impulsive at times.

6. Yes, I have Autism but that doesn’t mean I’m less of a person because of it. If anything, I’m actually more of a person in spite of it.

7. My house might be messy sometimes. (Editor's note: Can I get an amen?  Anyone?) It’s because my mommy and daddy spend all their time trying to find new ways to help me or teach my brother to talk.

8. Just because I can’t talk doesn’t mean I don’t understand what you are saying. My feelings can be hurt just like yours.

9. I wish my mommy and daddy knew how much I love them. I have a really hard time with emotions and I don’t always like to be touched. But I love them more than anything in the world, even more than my Legos.

10. I know I can be frustrating, but don’t tell me I won’t amount to anything because I have Autism. If you love and support me I WILL do great things in my life in spite of my challenges.

The things I won't do (or blame on) my kids

I'll be the first to admit that I've never really jumped on the environmental wagon. I don't really have anything against the green thing, I guess I've just had a few too many whack jobs put a bad taste in my mouth about it. Plus, as everyone seems to want to get a piece of the pie, "green" products generally equate to "expensive as crap" products. Not that crap is expensive, but, oh, well...you get the drift. It's late, and I'm a little punch drunk. Anyway, with resources severely limited these days thanks to my little therapy monkey, if it ain't cheap, mommy ain't buying it. So, imagine my delight when a family friend passed along a recipe for making homemade laundry detergent that is not only low on chemicals, but EXTREMELY cheap. Now, one thing you'll need to know about me before this relationship goes any further is that I am a grade-A nerd. I LOVE finding out how things work, and I love projects, so this prospect made me one happy camper. I haven't been this excited since I discovered cleaning with vinegar (See, told you. My life is extremely sad sometimes). Side note: when posing the question, "Does making my own laundry detergent make me a hippie?"...be prepared for a brutally honest response. The general consensus is a resounding yes.
So, anyway, after a few days of eye rolling, head shaking and amusement from coworkers and friends alike, I made my way to the local store to buy supplies. I cheerfully stocked up on all the ingredients, including the cutest robin's egg blue bucket you ever did see, by the way. Wisely, I did wait until all materials were purchased and I was fully committed before notifying the husband. This made all the huffing, second round of eye rolling and what-am-I-going-to-do-with-her wondering kind of useless. We've been married for 8 years now, and we've more or less got this down to a routine. It works for us.
Annnnyway, I am now departing on a grand experiment that may or may not end badly. Either way, I'm using the kids as a crutch on this one. The lack of foreign chemicals appeals to my paranoid mommy side, and the price difference between the homemade stuff and the store-bought makes me feel like I'm doing a little more to contribute to the therapy fund. The nerdy kid inside just wants to experiment already.
Wish me luck!

Look! It's a Light at the End of the Tunnel! Please, God, Don't Let It Be a Train!

I've got to brag on my kid a little bit now.  We recently met with his therapists, and I've since affectionately dubbed him my little schitzo-tistic (say it fast, you'll get it).  I mentioned before that Caleb was a little bit of a puzzling case, autism-wise, and my baby is nothing if not consistent in his inconsistency.  For those of you who may not know much about autism, the term "autism spectrum" is used to describe the array of potential symptoms present in any diagnosis, and it's a HUGE array.  Some children are mildly affected, others severely, exhibiting symptoms from mild social anxiety and OCD to tantrums and self-destructive behavior.  There are, however, certain hallmarks - things that are ALMOST always seen in children on the autism spectrum, and Caleb seems to be lacking quite a few of them.  Now, don't get me wrong, my denial phase is firmly in the past (on my good days).  I know my child is somewhere on the spectrum, although he seems to be merrily sliding along toward the high functioning end of the scale here lately.  He will probably always be a little quirky, and yet will still be regarded as relatively normal when compared to certain branches of the family.  But I digress.  One of the hallmarks of autism is a lack of comfort with social praise, or any sort of attention, really.  You can't really clap for an autistic child's achievements, most of the time, as they will either be made uncomfortable by this, or have trouble distinguishing positive connotations from negative and it would not matter to them at all (I'm probably on shaky medical ground here and should include the caveat that I am not, in fact, a medical professional).  The long and short of it is that my kid doesn't want you to clap for him, he wants APPLAUSE.  And a "Yay" thrown in for good measure.  "Good Job" never hurt anyone either.  When he does things, he'll look around to make sure someone's watching.  He brings things to our attention, which is not typically characteristic of an autistic child - at least naturally.  Imitative play and learning through observation is also rough, and my baby is ROCKING those skills.  His verbal skills have picked up and he's copying just about every word we throw at him these days.  He's still very quiet, and has trouble in group situations where people are focusing on him, but it's progress.  HE EVEN FED A STUFFED MICKEY TONIGHT, PEOPLE!  Granted, I demonstrated first, but imaginative play is usually pretty rare, so this is huge for us.  His therapists are extremely pleased with his progress and we couldn't be happier.  So, yay therapy!

Score one for the little guy

I'm trying to decide on a theme song for this post.  I'm torn between "We Are the Champions", by Queen, "Rip Her to Shreds", by BoomKat (thank you, Mean Girls soundtrack), and the theme from Rocky, by...whoever did the theme song to Rocky.  Feel free to read on and weigh in.

The last time I posted, I was gearing up for a conference call with my insurance company. I am, by nature, not a confrontational person. I like to talk trash, but inevitably, when the time comes to put up or shut up, I panic, my mind goes blank and I stumble through the conversation, only to be haunted by what I should have said for the next few weeks after the incident. This is why I love Dina (shout out!). Dina is now my personal barracuda, an employee at my son's therapy center who handles the insurance filings and is now a rock star in my book. She offered to conference call with me to my insurance company to try to get things straightened out. Unbeknownst to me, Dina had been trying to call my insurance company herself for a while, only to get transferred repeatedly to their "provider" department, aka "Press-One-For-English, Haha-Just-Kidding!" land. Knowing what I know now, I can only imagine that this was intentional, and they somehow saw Dina coming. This conference call was undoubtedly the most entertaining time I've had in quite a while. After being transferred to the "These-People-Pay-Our-Premiums-So-Be-Nice" department, Dina proceeded to take a sip of water, clear her throat, make sure her claws were thoroughly sharpened, and tear the representative to itsy bitsy, teeny tiny shark-bait-sized pieces. Excuses?  No ma'am.  Lost claim?  Let me tell you how you're going to fix this, honey.  She literally steam-rolled over the girl and no kidding, I had to mute my phone to keep them from hearing my laughter. The whole time Dina's doing her thing, I'm mentally hiding behind her back like a kid being picked on at school, cheering her on. "You go, Dina! Go on with your bad self!". Apparently my school yard self is pretty ghetto. And stuck in the 90's.

So, in conclusion, Dina simultaneously got the job done and probably put both our names on some ominous insurance company LIST, but I don't care. I was deliriously happy once I realized I was actually going to get PAID, until I realized it's all going right back into therapy and I'm probably going to drown in debt anyway. Still, very excited, since my kid is doing PHENOMENAL, by the way. Definitely money well spent.  But it leads me to wonder - how is the average, barracuda-lacking person supposed to DO this?  Are the insurance companies really that sneaky?  I like to think I would have gotten it straightened out myself eventually, but who knows.  Working for an insurance company (albeit not a medical insurance carrier), I've always been a little skeptical of the insurance-companies-are-evil line.  But I've heard enough horror stories now that it makes me REALLY nervous about this whole process.  Hopefully now that we have a suddenly-very-nice insurance company contact, this process will go a little smoother from here on out.  But if not, there's always...

OOOOOOH, Barracudaaaaa!

Annnd, we have our theme song.

And, there it went again

I mean, really.  I've had how many months to adjust to this?  It's not like I'm any stranger to neuroses, and yet I still manage to be embarrassed (and, retrospectively, slightly alarmed) when one bad day somehow tips the scales and slides me into Crazytown.
I've decided that I'm writing a manual for coping with life and a special needs child.  Rule #1: check your sanity at the door, people, and don't expect it to call again anytime soon.  When you think of it as a foregone conclusion, it's really not so bad - kinda like the way I feel about finally giving up on trivial things like housecleaning, shaving my legs regularly, and managing to remember the correct kid's name to yell when one of them is misbehaving.  There's a certain peace that comes with acceptance.

So, on to today's blog, subtitled: The Day I Bid A Fond And Sentimental Goodbye To My Sanity.

I don't know why (except to think that God has definitely got a sense of humor), but lately things just haven't been going my way.  Mostly little things, things people with a consistently stable anxiety level would find merely frustrating, but then there's me.  And said neuroses.  So when the car stereo guy screwed up what was supposed to be a congratulatory (and relatively cheap) present to myself for a recent accomplishment, I was frustrated, but managed to still cling tightly to my Zen. After all, he was nice, right?  And they're trying to fix it...
Then, when the windshield wiper motor in my aging but desperately needed and paid off car went out, I took a deep breath.  Things like this happen to people every day, I told myself.  And tried to ignore myself when Myself demanded, "To people who have huge therapy bills due IN THREE DAYS??"
But the tipping point was the interns.
My insurance company and I have a complicated relationship, mainly defined by the fact that my kid needs very expensive therapy, and they have an aversion to paying very large therapy bills.  Like I said, complicated.  So I decide to call the insurance company one morning on my work break, after checking their website and again finding that our claims are "in review.". I've since discovered that this term, roughly translated, means "Hold on while we try to figure out a way out of paying this.".
Meanwhile, unbeknownst to me, my coworker, who sits across from me, has been assigned two interns for an hour.  Not just any hour, this hour.  What I am sure is now thought of, in the minds of these two poor, fresh faced, defenseless college kids, as the "I have NOT had enough drinks to be able to deal with this" hour.  Unfortunately, I do not discover this until after I am dialed in to the insurance company and terrified to hang up, lest I never get through to an English speaking representative again.  The details are long and complicated, but the gist of it is that apparently no one in insurance companies talks to one another, and Cyd's therapy bills are not getting paid any time soon.  Add to that a little patronization from a representative whom I am sure has at least one perfectly neurotypical child at home, and I started crying.  A lot.  I am not usually an emotional person, and cry pretty rarely, but when I do, it's not pretty.  So my sweet, long-suffering coworker is frantically trying to distract the increasingly alarmed interns by talking over my hitching breaths and ugly crying, and the representative on the phone is deciding no, she definitely does NOT make enough money to be dealing with this.  I just want this day to END already.  Multiple departmental transfers later, not much was done, except the representative adopting a "Please don't jump" tone of voice with me.  I'm considering playing the Mean Girls DVD on loop to gear up for a conference call with these people.

Now, if you'll excuse me, I'm off to plan ways to avoid two college kids for the rest of their internship.

A little history

Okay, so my house currently looks like an episode of Hoarders: Children's Toys Edition, but I thought to myself, screw it, I'm working on the blog.  I am excellent at excuses, by the way.
So, to back up a little, I want to detail Caleb's story.  For us, there was no single "Aha" moment when we realized something was wrong.  He was slow developing physically, but I have a family history of those issues, and our older child was also slow to walk and climb, and was a little bit behind verbally, so we didn't think anything of it.  Cade had caught up, and so would Caleb, we rationalized.  The lack of verbal skills soon became puzzling, but everyone has a story for you when your child is developing differently - "Well, my cousin's kid didn't talk at all until he was three, and he's a physics professor now."  So, naturally, my mind raced ahead to Harvard classes and degrees, and eventually to Nobel Peace Prizes.  Denial is also something I excel at.
Doctor's appointments were made, and we were still a little at sea.  Our pediatrician is an excellent doctor (who I keep trying to talk into going into family medicine so I can become a patient myself, but he's still holding out on  me.  Turns out he's a very stubborn man.)  Caleb didn't really meet much of the typical criteria for an autism diagnosis - he was not talking, but was also not exhibiting any other "red flag" behaviors, like rocking or banging his head, or spinning in circles.  He had no attachment to routines, no social anxieties that we'd observed, nothing other than the lack of speech, and lack of pointing, which turns out to be a pretty significant symptom, incidentally.  We had his hearing tested - nothing (except a big fat medical bill).  So, our pediatrician referred us to a state program that provided speech therapy assistance.  A few weeks in, the therapist dropped the "A" bomb.  Autism.  I can still remember the frozen fear that filled me at that word.  My mind went completely blank - I had no idea where to go from there.  Something like that had never even occurred to me, which is shocking, since my mind is usually busier than a hamster's wheel, stressing about just about everything I can come up with.  So, we went to the neurologist our pediatrician recommended, and I have never been as scared in my life as I was at that appointment.  Logically, I knew that my child was what he was, regardless of what a doctor wrote down on a piece of paper, but I couldn't help but pray that that "A" word wouldn't come out of her mouth - if she didn't say it, maybe it wouldn't be true.  Maybe the speech therapist was wrong - what did she know, anyway?  She only spent an hour a week with him, and we were his parents.  I was his mother, I would have noticed, right?  My mind raced as my husband, a former psychologist, and the doctor conferred while Caleb busily banged through cabinets.  We went down the checklist, and again, Caleb was a little puzzling.  The speech was a problem, but that was the only "red" flag.  He had other yellow flags, but not enough to make a diagnosis.  So, she settled on another diagnosis - PDD-NOS, pervasive developmental disorder, not otherwise specified.  Only time would tell, she told us - we could come back in six months and, after re-evaluation, he could be classified as autistic at that point - he was still very young.
Wait and see is not a good game plan for me.  I like to plan.  I like to research.  I like to KNOW WHAT THE CRAP I'M DOING, and when I don't, I get anxious.  So, naturally, anxiety ensued.  My friends, family and coworkers were all very supportive and sympathetic -  although looking back, I'm convinced at least a few of them were secretly considering crushing up a few happy pills and adding them to my morning coffee when I wasn't looking. 
For the first time in my life, I felt completely out of control.  I did as much as I could - researched therapies, schools, at-home methods, and got him signed up for a great Applied Behavioral Analysis program.  Even then, I felt helpless.  This wasn't anything I could FIX, and that made me so angry.  Around that time, Caleb started learning his letters.  We didn't think anything of this - if anything, he was "late" learning them, since Cade had learned his at 18 months.  But Caleb seemed to take comfort in them - he would carry wooden ones around with him, and focused on the letters on various toys we had.  Still, nothing to any extreme degree - we could always distract him if we tried, and he did play with other, non-letter toys.  The letters led to numbers, and we were proud of him, although still a little confused.  His speech picked up with therapy, and he had no problems expressing himself - I have a crystal clear mental picture of him at just barely 2, toting this huge box of goldfish to me that he'd pilfered from the kitchen cabinet, proudly announcing, "Shish!  Shish!"  It still makes my heart smile to think of it.
So, here we are.  Some new things have popped up since we got started on this ride, as the doctor suggested they might.  He doesn't like large groups of people, although he will usually warm up about 10-15 minutes in and be fine, but he still likes to keep me in sight.  He's very affectionate, especially with me, but tends to be clingy.  I'm still hoping this is a 2-year old thing, since I remember Cade doing the same thing, and I had extreme separation anxiety as a kid.
Unfortunately, this is the nature of autism.  No two children are exactly alike, no set of symptoms the same.  Just as I'm relieved that he doesn't exhibit one symptom I hear about, he does something else that makes my heart race in my chest, and I panic, thinking, "Is it autism?  Or is it a phase?"  Kids this age are quirky by nature, so I can never be sure.  One day he'll play with his letters for long periods of time, sending me into a tailspin of worry, the next he's crafting elaborate plans to sneak his favorite snack out of the kitchen cabinet, and shouting "RO!" into a toy telephone like he's talking to his (apparently very hard of hearing) granny.   All we can do is focus on the positive -  his therapists and doctors are very encouraging, and the research I've done on my own has been enough to make me realize that it could be so much worse, and he's got a lot going for him.  Emotions are conflicting - a terrible love tinged with worry, sadness and a fierce protectiveness.  And guilt.

Hey, I am a mother, after all.

Kids are still kids

So, I have every intention of penning my next, potentially brilliant blog detailing more of Caleb's story soon, but for now I figured I'd share a little window into raising boys.  When we learned we were having another boy on our third and last go-around, I immediately started having visions of my two little ones as best friends - envisioning them playing together, fighting with each other, growing up together, and being there for each other after their father and I are dead and gone.  You know, all that cheery maternal fluff.  The day we had to explain to our 3-year old that his baby brother was a little different was one of the hardest days of my life, and there have been times that I have mourned what I thought was the loss of that special sibling relationship.  And then there are nights like tonight, which shine a little hope (and a healthy dose of humor) into our situation.  Poor Caleb was engrossed in the TV and absentmindedly decided to sit down on the lip of the half-full laundry basket currently residing in my living room (I'm getting to it, I promise).  What resulted was a basic function of physics - weight overbalanced, he dropped to the floor, the other lip of the basket flying up and knocking him solidly on the back of his head.  During this process, Cade, my 3-year old, is sitting on the couch nearby.  There was a moment of silence after the thump, Caleb trying to decide if it hurt enough to cry about, Cade trying to decide how mad Mommy was going to be if he laughed at his little brother's pain.  Typically, laughter won out, and he cracked up.  Caleb took one look at Cade, rejected the possibility of joining in the laugh fest, proceeded to shoot his brother an ugly look, then ran to me, boo-hooing pitifully.  I might have believed it wasn't ALL for effect if it hadn't been for the smug look he then shot Cade over my shoulder once I had picked him up and shown him suitable attention.
Who knows what the relationship between those two will be one day.  Autism being the fickle monster that it is, it's impossible for us to get any solid sense of what it will be now.  But incidents like this help keep me positive.  Their relationship may not be the partners-in-crime-and-friends-forever scenario I had planned, but that doesn't mean it can't be good - even great, maybe.  Hopefully we can do a good enough job raising all three of them that each child's differences will be seen as a part of who they are, and accepted instead of being seen as something that's "broken."

Annnnd, here we go

It's been a mere three months, three weeks, and one day since I was introduced to the diagnosis "PDD-NOS."  Or, in other words, "He's on the autism spectrum, but not quite autistic-y enough to get a real diagnosis.  Good luck with that."  Only my kid could be so confused about his degree of disability.  And on that note, I'll introduce myself.  I'm a young-ish wife and mom of three, battling pre-teen-dom, potty training and autism all at once.  The aforementioned three months, three weeks, and one day ago, I received my label - the Parent of a Child With a Disability label.  Another world opened up for me that day, and by "world", I mean more along the lines of a yawning pit of denial and anxiety attacks.  At least at first.  I'm an information hound - my first instinct (after considering and rejecting the possibility of prescription assisted relaxation) was to gather information.  I wanted newsletters, I wanted blogs, I wanted how-to lessons...but found very little.  What I did find only served to depress me.  Where were the parents who had survived this with their sanity intact?  Where were the parents who were confident and capable, who didn't live a life filled with constant worry, sleepless nights and poor personal hygiene? While the first is yet to be determined, I can tell you that I'm a sketchy candidate for those other qualifications, but I'm plugging along.  This blog is my attempt to give a voice to autism - or at least a unique one.  Autism is, by turns, a number of adjectives - terrifying, isolating, bewildering, frustrating.  But it can also fill one with amazement, pride, hope, and humor.  Some days I am defensive and angry at this THING that I feel is cheating me out of truly getting to know my child as other mothers around me are.  Another day I am excited and slightly (okay, not always slightly) smug in recognizing a new direction my son's brain is taking ("Take THAT, neurotypical two-year olds!  Screw your talking in complete sentences, my kid knows his STATES!")  As parents, we have an ingrained need to keep that stiff upper lip, get the job done, sacrifice for our kids, and make it all look easy to the rest of the world.  The problem with this being that while everyone is busy pretending they've got it all in hand, it's easy to feel like you're the only one floundering.  Hopefully this blog will inject a little reality into what it's like raising a child with a disability.  Maybe this thing will end up being a diary, something I can look back at one day with my children - a testament to my typically developing children on how to handle (and sometimes how not to handle) life's curve-balls, and a love letter to my baby, letting him know that although Mommy didn't always have a clue what in the world she was doing, she put her heart into every effort.  Alternately, maybe it will take off and make me a blogging superstar and I'll go on talkshows and make lots of money that will all end up going to therapy anyway.  In any case, here we go.