A rose by any other name

After a week of Crazy and Craptastic misadventures (seriously? rotten week…no spare time, no real progress, lots of drama, very glad it’s over…), we had Captain Adventure’s annual IEP meeting today. The big topic was around having him moved to a different school. It’s a longer (full school schedule) day at a school much further away (as in, almost twenty miles away!), but the program is much better suited for his needs.

The current program is a little more general, with a huge variety of kids with a huge variety of needs all in the same classrooms – everything from profound mental or physical disabilities to the absolute mildest of speech impediments, with one teacher for every four kids.

His teacher is an absolute peach, and has worked wonders with our little Captain – but he demands a lot more attention than she can possibly give. Not without neglecting her other charges, which surely isn’t fair to anybody.

The proposed program has one teacher for every two students, and is designed entirely around kids like Captain Adventure. We toured the school this morning, and I really liked it. It seemed as though every thing they showed me had me thinking, That is so perfect for Captain Adventure!

They “get” kids like him. They know how to handle his quirky behaviors, they know the best ways to get him to focus and do what he’s supposed to do. I was thrilled to see all the cool things they had in place to gently get their kids to move from teacher-makes-me to I-make-myself…exactly what he’ll need if he is ever going to mainstream…

Now, in some stubborn part of my mind I still don’t accept that my son is autistic. I still even hate saying the word. It’s incredibly hard for me to say it, to use Mr. Tongue and Mr. Lips together to say, “He’s autistic” when someone asks what’s wrong with him. (Believe me, they usually have good reason for asking…sigh…)

It clings to my tongue like a drunk hanging onto a barstool when asked to leave, and usually leaves my mouth with the same amount of grace as said drunk leaving the watering hole.

I stumble over it, every.single.time, and frequently erupt into this twenty minute spiel cataloging how PDD-NOS is not necessarily autism-autism blah blah blah…it’s horribly embarrassing and in the back of my mind I am usually screaming, “SHUT UP, TAMA! JUST…SHUT…UP!” and yet I can’t because I can’t just say he’s autistic and leave it at that because he is so much more than that!

A rose by any other name would smell as sweet…

Of course, by the same token, stinkweed still smells like stinkweed even if you call it star jasmine – so you can’t go around pretending one thing is another. It is what it is, and you’ve got to accept what it is and act accordingly.

Whether I like the word or not, whether he’s “high functioning” or “mildly” or whatever other rationalization and/or mitigation I can come up with autistic, Captain Adventure is autistic and needs a program that knows what to do with that specific disorder.

Right? Right!

So! Here we are! My husband and I, touring the autism program and talking about his progress (or lack thereof, depending on the category) and everybody is on the same page and having him transfer to this other school is all but a done deal in our minds. We’re excited! This is good! This is what we need! This puts new fire beneath our cauldron of hope! We’re all united behind what we need to do, parents and teachers and therapists and coordinators applauding the Great News that he can and should be transferred to this program which better suits his unique needs!

We talked for over an hour about how his autistic behaviors interacted with his therapy and how with his autism diagnosis it would probably be better for him to be in an autism program which is based on the most recent autism research and hey! Let’s see if we can say it ten times fast! AUTISM AUTISM AUTISM AUTISM AUTISM AUTISM AUTISM AUTISM AUTISM AUTISM!!!!

And then suddenly, out of nowhere!, the meeting facilitator suddenly poised her pen over his IEP and asked, “So, you’re OK with me changing his qualifying need to autism, which would qualify him for the new school and program?”

{deer in headlights}

My head said, “Yes, of course. This is a needed step to open the door to Appropriate Program Changes.”

But some other part of me…somewhere right around my womb, I think…said…no.

No.

NO.

You are not to put that down as my baby’s ‘qualifying need.’ No. That’s not OK. No. If you write it down…it will be…real.

Official.

Really official.

PDD-NOS lets you sidestep the a-word. It’s a definite maybe. It could be refuted later. “Yes, they thought he might be autistic, but obviously, heh heh, he wasn’t.”

But to say he qualified for special services because he is, undeniably, irrefutably, and all of us do herewith say aye to it, autistic…

I had to say yes, and I did say yes. Yes. Please do change it, so that he can be transferred. That is the best thing to do.

But that ‘yes’ almost tore my tongue out, it held on so tight.

It hurt. Almost physically.

Just like adding a new label for this blog did.

Welcome to the 'autism' folder of the Den of Chaos blog.

Now if you'll excuse me, I think I need to go find a corner and have a good cry...