Hard

This day was Hard. Capital H Hard. It kicked my @ss, as a matter of fact.

One thing I've discovered in the course of living the insanity that is my life, though, is this: Not all Hard things are good, but almost without exception, all good things are Hard.

Getting married (and working at a happy marriage) is Hard. Learning (and maintaining that knowledge) is Hard. Having (and raising) kids is Hard.

And today, leaving our therapy program behind was Hard.

Yes, I just winced in typing that sentence. Leaving something behind sounds so FINAL.

And maybe, in the context of full-time-program-therapy, it is.

But allow me to rephrase, because the end of the "program" is about the only thing final in this situation.

There's nothing final about the lessons learned in those halls. Nothing final about a set of parents and an autistic child learning--TOGETHER--how to navigate life from a new perspective. One neither felt anywhere close to being prepared for.

There is nothing final about leaving the people who have loved your child as their own. Who have bandaged his scrapes, soothed his fears and dried his tears. The people who have taught your child (and his parents) that he need not live a life restricted by his fears, or bound by the frustration of barriers in communication.

There is nothing final about leaving the memories made with those people--the silly songs you never thought you'd hear your child sing, the friends you never thought he'd make, the funny stories excitedly recounted at the end of the day.

There's nothing final about leaving people who would write such a wealth of heartfelt goodbye notes that they would leave that child's mother crying in the drive-through of a fast food restaurant. With carhops staring.

(It's possible that I may be gaining a reputation, by the way.)

In that other Hard time following little C's diagnosis, I found myself unable to look at baby pictures of him. Of course, they are scattered all over my desk at work, and I remember coming in to the office that first day after that fateful appointment.
I stared at them. And cried, as I was wont to do.

As I looked at his tiny face at three months, six months, nine months--a year, I couldn't stop myself from agonizing.

Was that the moment? That one? What about that one? Was he "okay" there, smiling up at the camera? What about there, examining that Easter egg so closely? That baby was healthy, happy, HE WAS GOING TO BE OKAY.

Right?

I didn't know the answer to that then, staring at those pictures through my tears. This week, as I assembled thank-you gifts for his therapists, I looked at those pictures again, and knew it. Really knew it.

That baby's going to be okay, and you don't ever really say goodbye to the people who have taught you that.

There was nothing FINAL about the goodbyes said today.

So allow me to rephrase...

If I only had the words.

Alaska Loves Me

YOU GUYS.

I'd heard that Blogger was having some issues, so I logged in with a vague notion of making sure my ramblings were still where I left them, and THEN I SAW THIS:



Not only have I gotten a pretty crazy number of hits since my last post considering I only know about five people, but AT LEAST ONE PERSON WAS FROM ALASKA.

You know what that means, right?

It means my hit count can't POSSIBLY be entirely thanks to my mom, sitting at home hitting the refresh button.

Hello, validation.  Nice to meet you.

Seriously, thanks for reading my crazy ramblings, even if you did stumble across my site when what you were ACTUALLY looking for was cute cat videos on YouTube.

While drunk.

Okay, for now it's back to studying.  I'll probably have a suitably emotionally unbalanced post later in the week, after I have to pick up my kid from the clinic FOR THE LAST TIME.

I know.  Contain your excitement, please.  Pass the Xanex first, though.


**P.S.--Did you know that the coefficient of variation can be used to compare two distributions to determine which has the greater variability relative to expected value?

NEITHER DID DO DID I!!

P.P.S. -- FINE.  Here.

Listen Close to Me

Listen to Mustn'ts, child, listen to the Don'ts.

Listen to the Shouldn'ts, the Impossibles, the Won'ts.

Listen to the Never Haves, then listen close to me.

Anything can happen, child, Anything can be.

-Shel Silverstein

It is one year, six months, and nineteen days ago.  I have spent the preceding months in a blissful state of denial that anything is "wrong" with my baby boy, who is just shy of two years old.  Finally, enough voices have banded together to nudge us into taking him for an evaluation with a neurologist, and there we sat.  My denial buzz is fading quickly as the doctor strides in--brisk, efficient, and as I size her up, my heart sinks as I realize that I cannot pass this woman off as a quack.  She is confident, her eyes are sharp with intelligence, and within ten minutes, she has my baby pegged.

"He has how many words in his vocabulary now?" she asks, chart and pen at the ready.

"Um, two," I mumble.  Sort of.

Scribble scribble, goes the pen.

"And he's not pointing?"  

It's not really a question, but I protest anyway.

"Well, he's reaching for things..."

"No," she cuts in.  "He needs to point.  One finger.  At an object.  With eye contact."

"Well...no."

Scribble scribble.

"Does he play with toys appropriately?"

"Mostly..."  I trail off, as I remember his "speech therapist" prodding him to play with a toy mailbox.  She is putting the mail and packages in the box, prompting him to play, again and again in my head, as C opens and closes the door.

Open, close.  Open, close.  Open, close.  

The doctor sees the lie in my eyes, and scribble, scribble goes the pen again.

When we are finished, her words are kind, but firm.  There is no room for denial in our lives anymore.  We do not get that luxury. 

She hands us a diagnosis sheet, and explains that he will need help.  

Aggressive help.  

Now.

Even with the right tools, the right people, the right therapy, he will be behind, she says.  He will enter school a year late.  

At least.

I stare down at the diagnosis sheet, numb.  

Just twenty-four hours ago, he "just" had a speech delay.  Now he has autism.  How did we get here?

**

It's a week later, and we are interviewing at a local therapy center.  The preceding days have been a blur of frantic Google searches and phone calls to anyone and everyone we could think of with an autism connection.  Anyone who might have answers.  Any answers.

Time is precious, the doctor had admonished, and we were desperate to take advantage of every second--so there we were, taking the first available appointment for an evaluation at this place I never thought we'd be.

I had pictured him in school, I had pictured him in sports uniforms, I had pictured him in a cap and gown, but I had never pictured my baby in therapy.

Funny, that.

I watch as he identifies letters and numbers on blocks, a skill we are so proud of.  

See? whispers my remaining doubt.  See how smart he is?

My mother's eyes see the knowledge, but miss the significance of the intelligence, the focus.  They miss so much else.  His gaze is cast down as he names his inanimate friends, and he is difficult to pull away from them.  Other toys are presented, but he shows only cursory interest, always going back to the letters.

Scratch, scratch goes another pen, on another chart.

Other evaluations are performed, other gentle questions asked, but by the end of our session, I have developed an irrational hatred for pens.

**

It is a few weeks even later, and insurance papers have been signed (with more pens), schedules arranged, and prayers are winging their way toward heaven at a frantic rate.  He starts his first week in therapy, and I am trying to convince myself he just needs a little boost, that's all.  He'll be fine.

He is fine.

Then a video comes home, demonstrating something-or-other that we needed to work on with him too.  I don't remember the skill, am not really sure I ever knew, because all I could see was my baby, sitting at a table, developing an enmity for a toy hammer.  

The therapist is hammering, hammering with the toy, then places it down in front of him.

"Your turn," she prompts gently, encouragingly.

Chunk goes the hammer, over his tiny shoulder.

Hammer, hammer, hammer, again.

"Your turn.  You do it, C."

Chunk, sails the hammer.

He is whining, confused, and as I watch, I realize with shock that he does not know what to do.  The toy's purpose is lost on him, and in his bewildered state, he is removing the object that is causing the frustration.   

In the weeks afterward, other objects follow the hammer's trajectory.  

Legos.  Dolls.  A mostly-fully soda can, in one memorable instance.

But one day, whether the light had finally dawned, or he just got tired of his therapists stalking him with hammers, he picked up the toy and hammered.

**

It is a year from the day we last sat in the neurologist's office.  C is a different child now than he was a year before, in some ways good, others not so much.  He is anxious in the waiting room, and I worry and fret that she will not see what we see in him.  

The progress.  The change.  The happy baby that has been inching his way back out, slaying the hearts of therapists and relatives alike.

I have come bearing progress charts, though, and her brows wing skyward as she reviews them.

"Keep it up," she prescribes.  "Don't change a thing."

The same doctor who pronounced that he needed help--now--was this time suggesting that C could "grow out" of his diagnosis.

We left her office happy, but slightly bewildered.  Was there such a thing as a recovering autistic?

**

It is one year, six months, and nineteen days since C received his autism diagnosis.  He is happier than any child I have ever known, and frighteningly intelligent.  His progress is amazing, and his newest "skill" is talking back.

"No," he insists nightly.  "I not gonna go to bed."

It is music to our ears, but I am careful to smile only as I turn away, after giving him my stern face.

Today, he is a newly minted preschooler, slaying the hearts of teachers and aids alike.

And today, he begins his first steps out on his own.  

His all-but-final evaluation is complete, and the consensus is that he has the tools he needs, now.  We have spent the last year, six months, and nineteen days developing them, shaping them, pushing him to use them.

All that's left now is to put them into practice. 

His most effective teachers now will be his peers.  There will be no following him around with pens.

Well, at least not more than once per month.  He's not totally being flung out into the blue.

So in a little over a week, we go cold turkey.  All Pre-K, all the time.  No more clinic.

My emotions are mixed.  I am so very, very proud of this kid.  He has worked so hard, and his therapists have worked even harder, to get him where he is today.  

I am sad, though, to say goodbye to our safe, cozy little bubble.  We have learned much there, and made some amazing relationships and connections.  We all are different people now than when we first passed through those clinic doors.  

Autism has shaped us, in a way we never expected.  For all the time I spent adjusting to seeing him in therapy, now I can't imagine him out.

I wonder if I'll ever have an answer for the parent that once asked me, fresh from diagnosis and understandably terrified, "Do you think it can be cured?"

One year, six months, and nineteen days' worth of therapy later, I don't know how to answer that.  There are those that would pronounce my child cured, I am sure.  The word makes me uncomfortable, though, because it seems to negate who he is.  The child he has fought to be, the struggles he has determined to overcome.

I like to think that he and his team have spent the last one year, six months, and nineteen days shaping his autistic-ness into strengths that he can be proud of, and mitigating the struggles that came along for the ride.

He is autistic.  He will always be.

But that fact doesn't deserve my terror anymore.

Here There and Everywhere

Sometimes I feel like parenthood is an Indie 500 race, but with more critical pit stops and fewer cute pit-crew guys.  At least I'm assuming they're cute, as I've never actually KNOWN any pit-crew guys.  They're probably all hillbilly slobs, but LEAVE ME MY ILLUSIONS, PLEASE.

Now that Big C is in kindergarten and actually learning things from someone other than Tad in the Leapfrog videos, AND little C is settling into part-time pre-K, AND I'm cramming for a major test, AND killing myself training, I'm pretty sure everything is a blur at this point.

Which may explain why the dog looked extremely confused tonight when I very wearily instructed him tonight to GO FIND YOUR BOOKSACK NOW.

The good news is that despite having more on my plate now than ever, I'm feeling better than ever, strangely enough.  After about two weeks of detoxing from junk food like an addict on crack, I'm finally forming some better eating habits, which is resulting in more energy for working out, which resulted in THIS last night:

It doesn't look like much, but it's the best time I've EVER posted, and at the longest distance.  And I felt GREAT doing it.  Add to this the hard nights put in working at Insanity (the workout routine, not the mental state at which I ROCK already), and I'm in the best shape I've ever been in, and feeling pretty confident going into this race thing.

Then, today, we get this in Big C's friendly little Kindergarten Parent/Teacher communication folder:

It's a reading/comprehension skill set test-y thingee.  Which I didn't even know he was being scored on, but for which the average score is 23 and my kid scored 88.  EIGHTY EIGHT.  Seriously off the charts.

I am proud and also so, so bewildered.  His teacher and I will be talking soon, methinks.

Next up is little C's observation at typical Pre-K, which is coming up Thursday. Read: Thursday Day of Anxiety (for Mom).  I'm hoping all goes well, although I can't actually say what exactly I'm hoping for.

Luckily, his therapists and way smarter than me and also extremely patient with all of my craziness concerns, so I'm sure I'll get a pretty comprehensive run down, after which I will nod sagely and act like I knew exactly how well he'd do all along.

They humor me.

A Well Read Man

So, it's been kind of nuts since my last post.  Never mind the fact that I am training like a maniac for this, now have a kindergartner AND a preschooler, and am STILL calling my kid-who-moved-three-states-away to the table for dinner just about every night, I just (insanely?) accepted an offer to co-chair on the board of our state's annual autism fundraising walk.

WHO ARE THESE MANIACS WHO ARE UNDER THE IMPRESSION THAT I AM A RESPONSIBLE ADULT?

I mean, really.  Most days I am doing VERY well just to remember to brush my teeth AND shave my legs.  Personal hygiene is the first to go on the way to loss of sanity, I hear.

I also decided to start studying for a pretty-big-deal designation for work, which may or may not go well.  My kids are slowly stealing my brain cells, one by one, so who knows if I'll have any left come test-time.  The good news is that my kids seem to be absorbing said brain cells, and those fickle bastards seem to be working better for them than they did for me.

Tonight big C had his first kindergarten homework assignment.  I'm a little conflicted about this, as A) They have the rest of their school-aged lives for homework, why start in KINDERGARTEN? and B) They have the rest of their school-aged lives for homework, can't I have ONE MORE YEAR OF PEACE, PLEASE?

But still, my big boy ROCKS at homework.  Too much so, really.  I go back and forth on big C's abilities - maybe I'm just being that crazy mom who's convinced her kid's a genius and the teacher secretly HATES getting notes from.  Or maybe he's REALLY going to be gifted, in which case I worry myself silly that he won't be stimulated enough when the teacher is sending home assignments like "Learning Upper Vs. Lower Case Letters A, B and C," (accomplished at 19 months) "Recognizing and Writing My Written Name," (21 and 26 months) and "Writing a Simple Sentence" (32 months).

The kicker was the second part of his homework assignment - having Mom or Dad read a book to him for 10-15 minutes before bedtime.  This was just to get them into the routine of reading, the homework guide assured me.  Good habits start early.

Riiiiiight.  Come bedtime, Big C picked up one book (a tongue twister by Dr. Seuss) and little C picked up another (Cars 2, written for 6-7 year olds) and they BOTH started reading.  TO ME.

Um, am I not supposed to be the smart one here?  Being an adult, and all?  Shouldn't they need me for something?

There are many sucky things about autism.  Every time Big C panics at the mere THOUGHT of flushing the toilet at his grandparents, and every time Little C wails in helpless confusion at an unexpected schedule change, or walks around hoarding toys like he'll never see them again, I can't help but feel defeated.  No matter how hard we work, it always feels as if I'm doing SOMETHING wrong.

But tonight, hearing both of my boys read to me--it was magic.  I could see the pride in their eyes, and caught a tiny glimpse of the men in training that they are.  They were so confident, so at ease with themselves, that it was all I could do to blink away tears.

My babies have their weaknesses, but they also have their strengths, and it's my job to help them with the first and be damned proud of them for second.

If I accomplish nothing more than that, I think we're in pretty good shape, no?