Tuesday, September 20, 2011

Where's our boy Zack?

Madi opened up my feelings about something I've struggled with recently with the perfect line last night at dinner.  She was joking, teasing Zack, saying, "Where's our boy Zack?" so he'd say cheerfully "I'm right here!"...but the phrasing struck me, for some reason.

Where's our boy Zack?

Well, to be honest....not always here.  

In fact, sometimes I don't know where he is, at all.

Again, to note:  Zack's autism is moderate to mild.  We're so lucky to have reaped the benefits of very early intervention, and many families have it much worse than us.  Zack's overall intellectual ability is growing by leaps and bounds, and though socially he's still delayed, his improving handle on complex language is improving his social abilities, too.  At times, he speaks so clearly, coherently, and intelligently, we almost forget about his autism entirely.

Other times, however...it's impossible to forget.  Because sometimes - too often, still - Zack goes away.

I don't know how else to describe it.  He doesn't lapse into a fugue state, doesn't stare off into nothing, but rather descends into this seemingly random jumble of shrieks, mumbling, jabbering, twittering, twitching...spasms?  I don't want to call it that, because he's not seizing or anything like that.  But it's like a part of him goes away, or gets stuck, somewhere, and everything he's trying to say or express or do gets short circuited and comes out all jumbled.

It's scary, and it's damn depressing. Because I don't know what's going through his head.  Is he even thinking coherent thoughts?  Or does his brain literally scramble into nonsense during those....fits? (again, I hesitate to use that word, because that's not what it is, really).  I'm not sure what's worse...the idea that for a moment - sometimes as long as five, ten, fifteen or even twenty minutes - Zack blanks out and his mind scrambles....

....or, that on the inside, his thoughts are coherent and understandable to himself, but something has scrambled the connections, so he can't communicate with us, and is literally trapped inside himself.

Now, we've gotten very aware of the triggers.  If he's had a long day, with no nap, and he's very tired, he's susceptible to these behaviors.  That, in a way, makes sense, and doesn't bother me so much.  We're all a little scrambled in our own ways at the end of a long day.

But what frightens me is how small, little things set him off.  Like certain television shows, and not even crazy ones with the flashy-lights and loud music - there's one or two shows I'd even call good, educational shows that for some reason flip a switch inside him, set him off.  One day, he was so wired and babbling from one show, I couldn't even get him to nap, or stopping leaping and jumping around in aimless circles.

Angry Birds sends him sky-high.  We can't play it around him, or he'll demand we play it, over and over.  Tom and Jerry is a no go, also.  Leaves him screeching for hours.  Abby bought him an Angry Bird stuffed animal, and even THAT hypes him up - because he uses it to imitate the game - so much that Abby won't let him take it to bed, for fear he'll never sleep, will just play with it all night.

The sounds.  The screeches, the chirps, babbling gibberish and screams.  Very depressing.   Haunting.  Because when that happens, I literally wonder to myself: "Zack.  Where the hell are you, right now?"

And it's a sober reminder that as well as Zack has done, he still has such a long road ahead.  Right now, he's in a special intervention program specifically designed for autism, with a one on one aide.  He's mainstreamed on a limited basis with a mainstream daycare next door to his school for several hours a day, but under very controlled circumstances.  With a one on one aide.

Next year, he'll be mainstreamed into public school kindergarten.  An environment geared toward middle level, average kids.   He'll still have a one on one aide....but when he goes away...when he gets all jumbled...like he so often does...

He'll stand out.

Horribly.  Like the proverbial sore thumb.  Like a weirdo.

And how will the teacher - a public school teacher - react?  Will he have a good aide who will know what to do?

Things have gotten so much better, don't get me wrong.

But we've got a ways to go.  And sometimes, I'm afraid that Zack'll always have these moments, when he goes away somewhere, deep inside himself.  Leaving me to wonder.

Where's our boy Zack?