Tuesday, December 20, 2011

Doing the Right Thing For Our Boy

Haven't blogged about Zack lately, mostly because things have run on a really even keel.  Not a lot of upheavals to speak of.  He has good days - really good days - and days that are rougher than others.  Intellectually, there are no issues at all. Zack is developing into a very bright (maybe too bright) little boy.  

He's active, very happy and physically strong and healthy (of particular concerns, as severely autistic children often aren't), he's interactive, getting better at socializing all the time, and expresses his needs and desires and wants pretty clearly.  His range of expression and vocabulary has grown dramatically, and if it wasn't for his delayed emotional range, on passing interaction, he doesn't seem autistic at all.

But he's still not there, yet.  And Abby and I've seen that these past few months, more and more.  As I said, on the outside, he looks and appears and acts - on very good days - as if there's nothing seriously wrong with him, maybe just a little immaturity and that's all.  And he's so-so-so smart.  You just have no idea.

But...something is still missing.  He's four.  And VERY much a boy (which sometimes makes it a tough call.  Is it his autism we're dealing with, or him being a BOY?).  But there are still gaps, for lack of a better word.  Academically, he thrives.   He literally memorizes just about ANYTHING he hears, sees, or has read to him  - in fact, it may not be long before he's reading himself.

But he still doesn't understand things. It's a lot like the really intelligent, brilliant student in school who could memorize every line of all 150 Shakespearean Sonnets, but doesn't understand what any of them mean. We still have to discipline Zack as a two year old, simply because he doesn't comprehend certain topics.  Like why it's wrong to hit his sister.  If he hits her and we discipline him, he understands - sorta - that if he does it again he'll be disciplined again.  But he doesn't "get" that it's wrong and it hurts her.

And other things, especially safety concerns.  Thank God we got that fence put in last fall, because even though he's good at staying away from the road because we yell at him about it, he doesn't GET that the road is something to be scared of.  In fact, he's not scared of ANYTHING - which, in a way, could be considered good.  Of course, it's also part of being a boy, as we've come to understand.

But he's still delayed.  By four he shouldn't be able to slide-rule the mysteries of the universe, but he should be approaching a level of self-sufficiency. And, in some ways, he HAS.  He's improved so dramatically, there's simply no comparison to how he used to be.  But he's still not there.  

So we scheduled a meeting with Zack's teachers at the Children's Institute at Binghamton University , because Abby and I have decided to leave him there for Kindergarten and perhaps beyond, instead of having him start public school in the Fall, like we'd originally intended.  This was a big thing for Abby and myself, but perhaps even bigger for Abby.  Because hey, let's be honest....

We want our kids to be happy.  Successful. Healthy.  But we also want them to be normal. Accepted. To fit in.  And I think that maybe - probably even myself - we had both rationalized it as okay for Zack to get early intervention before KE,  but that by then he should be phased out into a "normal" school.

But he's just not ready.  And also, we realized that BU's program has been so fantastic, Zack has gained so much ground there...why change what's OBVIOUSLY working?  Plus, I've worked as a para-professional in elementary special education.  No offense to those folks, but the quality of para-professionals is hit and miss.  

Maybe Zack would get a good aide interested in Special Education and autism in particular, but more than likely he'll get a well-meaning but essentially clueless college student hired by the school district, trying to make some extra cash.  And school districts send these aides to workshops - I've attended more than a few myself - but it wouldn't be the SAME level of intervention he's receiving at BU, where his aides are currently pursuing degrees and careers in special education at the professional level.

And BU's center has world-renown.  Children coming from as a far as SWITZERLAND to receive intervention.  And there's YEARS-long waiting lists for placement. It was literally a blessing that we got in.  If he had problems in his public school, he'd never be able to get back into BU's program.

Fortunately, BU agreed with us, and were delighted we'd decided to stay the course.  So instead of phasing out, we're going to see this through.  We'll transition Zack when he's READY, not when we want him to.

It  all came down to this: our "needs" as parents versus Zack's needs.  And it was really a pretty easy choice, when you get down to brass tacks.  Because as parent, that's what you do.  Not what you want to, but what the right thing is for your kids.  There's really nothing else that matters.