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."

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, and major news personalities blindly attribute violent crime to autism (see, 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:

Monday, August 6, 2012

What the What?

I'm going to need someone to explain to me how THIS...

...Turns into THIS.  IN JUST FIVE YEARS.
(photo credit to my amazing friend C, who is an expert at wielding whatever you call that kind of camera NOT attached to a cell phone.)

With this milestone, I have finally been forced to face the fact that my baby is not a baby anymore.  His body is long and lean (okay, mostly just lean) and absent of all baby fat, even when I squint.  And I've been squinting a LOT lately.

Tonight, I put him to bed and told him I loved him, saying tearily, "I'm so glad you're my baby."

To which he responded, "I'm not a baby, Mommy."


Which I am, mostly, but that's neither here nor there.

Five years ago, I rested his brand-new baby body on my chest for the first time, inhaling that magical scent of newborn and marveling that this tiny human was my own.  In the time that has marched past since, he has made us laugh, cry, grit our teeth, and burst with pride, sometimes all at once.

Would that I had the words to do justice to how much I love this little monster.

I'll Love You Forever
I'll Like You For Always
As Long As I'm Living,
My Baby You'll Be

-Robert Munsch