Sunday, September 23, 2012

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.


Thursday, September 20, 2012

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.








Tuesday, September 18, 2012

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.




Monday, September 10, 2012

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?


Thursday, August 23, 2012

The Right Kind of Learning

I've done a lot of thinking in the last few weeks about the things big C will be learning in school this year.  I have wondered if there will be enough to keep him occupied in class, hoping for a healthy balance between reinforcement of the things he's already learned, and opportunity for new growth.

Then, today, I read this, and it brought it all into perspective for me.

So many times I have wondered about how to talk to him of his brother's special-ness, how to  introduce the subject in a compassionate, instructional way without confusing him or overloading his little brain.  This post encapsulates exactly what I want to say to him, what I want him to really learn.  More than the letters or the numbers or even following directions, I want him to learn compassion.  I want him to learn to look past the surface of others' actions and see the person underneath.

Tonight, after I'd been mulling this post all day, big C and I were discussing his school day.  Lo and behold, he informed me that everyone in his class had gotten smiley faces on their behavior charts except for one little boy, Josh.

He was mean, my baby said.  He was trying to kick people and was "bad."

Slowly, cautiously, I prodded for a little more.

"Why do you think he was mean, baby?"

A shrug was my only answer.

"Are you happy when you feel mean?"

After an initial protestation that he was "never" mean, I had to explain that it was okay to feel mean sometimes, like when he was hurt, or sick, or too tired, or angry.  It was just never okay to act mean to other people.

Satisfied with the clarification, he acknowledged that yes, sometimes he did in fact feel mean, and no, that did not make him happy.

I pushed it a little further.

"So do you think Josh is happy, baby?  Do you think he might be feeling mean because he's mad about something, or scared, or maybe--just maybe--he's lonely?"

Now, before you start rolling your eyes at me, I realize these kids are in kindergarten, and this may be a gross act of overthinking on my part.

I'm pretty good at grossly overthinking.

But at the same time, I know my kid, and I know his heart, and his way of thinking about things.  All sorts of things stay with this child long after I'm positive they've passed through one ear and out the other.  He mulls them, turns them over and over in his head when it just looks like he's watching TV, or coloring, or reading his books.  When he's satisfied that he's mulled something to death, a (sometimes frighteningly insightful) question will usually come out of nowhere.

That's just how he rolls.

So, although Josh may be a kid who just likes to be mean, I have a hard time believing that a five-year old is acting out in such a way without some sort of underlying issue.

An issue, which I tried to explain to Big C, that he might be able to help with.

"How?" he asked.

"By being his friend, baby," I answered.

"But he doesn't want to be my friend," he protested.

"That's okay," I reassured him.  "Sometimes it's okay if you just try."

We went on to discuss what one nice thing he was going to do for Josh tomorrow.  Of the scenarios discussed, we settled on wishing him a happy birthday (supposedly, this kid's birthday is Saturday.  I am fully prepared for that to be a complete and total five-year-old fabrication, but it's a start, although potentially a really confusing one).

During our discussion, the thought was ever present in the back of my mind: That boy is somebody's baby.  It's somebody's hope that he is happy, that he has more good days than bad, that he will not go through life  alone.

It could just as easily be my baby.

When little C gets dysregulated, his normally sunny disposition can turn stormy in a heartbeat, sending him into a tizzy of confusion and fretfulness and whines that probably look to all the world like another bratty kid.  A kid that might cause another child to label him as "bad."

So I think I've come to the conclusion that this is how I'll teach Big C about his brother's special-ness--by teaching him there's nothing that special about him at all.  His challenges may differ here and there from those of others', but those are just what's on the surface.

It's our job to make sure we see what's underneath.


~"Brave is not something you wait for.  It's a decision."
             --Momastery


Monday, August 20, 2012

Letter to a Radio Personality

It's morning, and we're on our merry little way to therapy. And by "merry" I mean, um, not. It's been a challenging morning.

I tune in to one of my favorite morning shows, and they are discussing (for whatever reason) Kanye West. I am half listening as little C chatters in the back seat, asking me to spell (again) every word that pops into his head.

Then I hear it. In discussing Kanye's ridiculous behavior in the whole Taylor Swift debacle, one personality says, "I mean, who does that? You've gotta have Asperger's or something...what are you, autistic?" I'm quoting loosely, but that was the gist of it.

I try not to overreact to things like this, but, well, your viewpoint changes when you have a special needs child, that's just how it goes. I can't say I've never said something stupid or insensitive in my life, that's for sure.

So it wasn't the words so much that bothered me (although they kinda did) because I know it wasn't MEANT to be hurtful. It was the tone. The implied, "What is WRONG with you?" tone.

My first reaction was anger. My BABY was in the back seat. My baby WITH AUTISM. Who is not, by the way, deaf. Many times, words seem to elude him, while MEANING conveys. He understands more than I give him credit for sometimes, but I pray this is one thing that goes sailing over his little head.

He is young yet, but I don't plan to make his autism some dirty little secret as he grows, because it doesn't deserve to be kept secret. It deserves to be discussed, questioned, even admired, because with as many challenges as it sometimes brings, it also brings it's own unique gifts.

It does not deserve to be used as an invective.

So, in remembrance of every unthinking thing I'd ever said, I decided to write a letter. Because that's what I do when I'm pissed. I try to word it as I would wish a letter to be worded to a foolish, but well-intentioned me, Pre-diagnosis.

Who knows if it will be read, but maybe it will be.

Because words matter.

--

Hey guys! First off, love the show, but I wanted to comment on something that I heard this morning. I'm sure you get people griping at you for things you've said on the air all the time, but bear with me.
This morning you were talking of Kanye West and his infamous Taylor Swift debacle, and in describing how outlandish his actions were, you described him as "autistic, or something." My heart sank when I heard this, not just at the words, but the tone used. I know you meant nothing detrimental (do we ever, really?), but you see, my son was in the back seat when you said this. He is approaching four years old, and he is autistic.
I immediately started thinking damage control--did he hear it? Did he understand it? What does he think when he hears things like that? As his mother, I want him to grow up with the knowledge that he is autistic, and see himself as wonderfully "different", but never "less". When the word "autistic" is used in a negative way, how can he help but hear it and think, "If 'autistic' is bad, and I am autistic, what does that make me?" As I know you are a group of people who care about - and do SO MUCH - for children of all shapes, sizes and ability levels, I thought I'd write and ask you to consider using this word more carefully.
In a world where a parent's autistic son can be denied a heart transplant simply because he is autistic (see http://abcnews.go.com/Health/autistic-man-denied-heart-transplant-upenn-hospital/story?id=17006152), and major news personalities blindly attribute violent crime to autism (see http://www.huffingtonpost.com/2012/07/23/joe-scarborough-james-holmes-autism_n_1694599.html), public perception is critical in helping us see the value in people with autism, and more importantly, teaching them the value of themselves. They are listening, and your words matter.
Thanks for your time!

Thursday, August 16, 2012

The Month That Tried to Kill Me

Sometimes I wish I had the time to blog every day, because I'm really fumbling to try to encapsulate the last three weeks into one posting.  The insanity would seem much more manageable in small doses.

One would assume.

Because my originality has gone the way of my sanity, and also because I'm still a little raw about it, I'm going to beta-cap dropping off the teenager for his big move, a la Lincee Ray.  Also, she's a genius and you should totally read her blog.  Except that you'd probably need to watch The Bachelor and Bachelor Party for it to make sense, and I dunno about that these days, but whatever.  I digress.  Beta cap.  Here we go.

Kid packing, Daddy fretting, Cyd soothing, car loading, Leavin' on a Jet Plane humming, holy-cow-what-was-I-thinking-taking-two-little-kids-along-for-an-hour-long-road-trip-ing, airport treking, Daddy brave-facing, Cyd calm faking, Kid farewell-ing, reality hitting, CYD CRYING,  TSA agent fish-eyeing, strangers staring, something-about-FaceTime blubbering, car retreating.

In short, he is fine, and very patient with his hysterical stepmother.  We are ALMOST fine.  It was the right thing, but let's face it--sometimes the right thing just sucks.  The good news is that thanks to FaceTime, we now see him more than when we actually lived in the same house.

So that was wave one.  After a short period of semi-recuperation, this little monster turned five years old.


FIVE.  YEARS.  OLD.  You know, the age at which children START KINDERGARTEN.

Hello, Wave Three

And, just to put the icing on the soon-to-be-Valium-laced cake, this one started an actual, honest-to-God typical preschool program the same day.  


Lovable, yes.  Picture happy, not so much.

It's early days yet, and he still attends therapy three days a week, but so far it's going really, really well.  Not surprisingly, I fretted through their entire first day, only to come home to learn that little C had a great day, getting a "happy face" on his first real school behavior chart, while big C was already "over" the whole thing, and Mommy, could you please move?  You're blocking the TV.

I was so relieved that we had all made it through the small tsunami that was this month that I got a little excited, and when a friend posted on Facebook that he was doing this, and asked who wanted to join him, I was all "I'll do it!  Sounds like fun!"  And then I actually looked at the website and learned that there was fire and barbed wire involved and came to the conclusion that I had finally lost my mind for real.

However, I have since come to the conclusion that this is going to be a really good thing for me.  I need to do something out of the box, something empowering...something to keep me distracted from fretting.  I'm in pretty good shape now, but I've got a lot of training to do between now and October to keep from completely humiliating myself.  

Fun fact: I actually made up a highly detailed training calendar, complete with periodic "rewards" for staying on track with training and eating healthy.  One of my fellow autism-moms saw my post about this, suggested I just might be overthinking it a bit, but said she'd give me points for using ABA techniques on myself.

And I laughed.  But only until I looked at my calendar again and realized she was right, and then I was a little embarrassed.

In any case, we all survived this month in one piece.  I'm just hoping I can quote the same survival rate come October.  Until then, my new motto: