Saturday, January 21, 2012

This is what we wanted...right?

My breaking point and I, we are eye to eye these days.  We play this game of chicken, which would be funny, except it's not.  Some days I realize all the things I have to be thankful for, and I'm in a good place.  Other days, the Breaking Point starts breathing down my neck, and it all just seems too much to deal with, the decisions to be made too great in importance.  One of these days, possibly one day soon, one of us is going to have to give, even if just for a short period.  So far, it ain't me, although things are touch and go.  

We met with our school district, to get the ball rolling for Little C.  I already had a bit of a sinking feeling about how this was going to go.  His praise of late has been effusive among therapists and teachers alike, his progress impressive.  In our prior meeting with school district staff, they stressed that just because our baby had a medical diagnosis did not mean he would meet the criteria for an EDUCATIONAL diagnosis, necessarily.  He had to be evaluated.

And that's when I heard the whistling of that damn shoe starting its descent.

Yes, little man's progress has been out of this world.  When I think of the lost, confused, frustrated child of nine months ago, he seems almost foreign to me.  Now my baby is happy all most of the time, he speaks effusively, if not always clearly.  His frustrations come and go, but are generally manageable.  His therapists think he is the cutest, sweetest thing ever, and we are so proud of him.  Twice over the holidays, I heard someone proclaim, "If you hadn't told me he had a disability, I never would have known!"

But I know.

As much as it lifts my hopes to hear that sentiment, these are words spoken by people around my baby for short periods of time.  For every bright smile he gives them, my mother's heart bears the bruise of another time - an instruction given that is met with only a look of incomprehension.  For every word he speaks to show off to strangers, there are half as many times when a whine or tantrum is considered a perfectly sufficient form of communication for Mom.  These incidents are lessening, yes, but it is always - ALWAYS - a battle.  Nothing comes easy for my boy.  

Now that I am more involved in this community of ours, I hear stories enough to make me grateful - extremely grateful - that my child is doing as well as he is.  He sings the Itsy Bitsy Spider song, cries out "MOMMY!" every day when I pick him up, he will ask politely (and sometimes not so politely) for "milk, peas" when he is thirsty.  He has made a great deal of progress.

But he is still autistic.

This label will never leave him, I am convinced.  It may change as the years come and go - maybe coming with qualifiers, or descriptives that gentle the blow.  But he will always be affected by (or "have") autism.  He is a fighter, tackling each new skill put in front of him, but I cannot escape the feeling of helplessness when it is ALWAYS a learning process.  The things that come so naturally to other children are WORK for my boy.  And that's why I think he will need help for a good bit of time to come.

As we sat in that evaluation room, watching the educators carefully take their notes and smile with delight occasionally at something or other my little ham did, my husband and I were experiencing very different reactions.  He, filled with pride, listing off all the things little C had accomplished in a mere nine months, pointing out all his strengths and remaining positive about his weaknesses.  

Me?  I was proud, yes, but also weary.  For here was another battle presented to us.  My baby is autistic, but apparently not autistic "enough."  The skills he performed in that evaluation, the rudimentary questions he answered, all were hard won through nine months of hard work at intensive therapy, and at that end of that interview, we were told that little C did not qualify for services as things stood.  Nine months ago, I would have told you those words were exactly what I wanted to hear.  Now, they scare me to death.  He's in a great groove now, the shining star in his own little special needs universe.  But real school?  It's not anywhere near that universe, and without services, I don't know what to expect.  

It's hard to explain, this feeling of parental intuition I have.  The women interviewing my baby had doubtless seen many children all over the spectrum come and go, and they seemed confident in their pronouncement that he was doing, "So great!"  How to explain the feeling I get when he is mid-stream showing off a new skill, and then is reduced to abject panic when a motorcycle guns its engine on the street outside?  How he can list every letter in the alphabet, spelling numerous words, but cannot tell me about his day?  
He may have long stretches where he follows the "rules" of what he's been taught to do and can appear almost completely normal to an outsider - but who will understand that yes, he IS doing great...until he's not?  Our ultimate goal for him is to be functioning as a completely typical child, in a typical classroom, among typical peers.  But I worry, out of my mind at times, that we're just not there - YET.  

Our school system doesn't have the best track record for services, although it is not the worst among the parishes, so I'm hoping for the best.

Until then, there's just that Breaking Point and me.  Playing chicken.

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