Monday, September 20, 2010

The IEP of doooooooom…

Today was the second time we’ve gone through a “big” IEP meeting. Every three years, they do the “tri annual” thing; I think the main difference is that they are longer. Much, much longer. Epically longer. Longer in a way that can be a bit mind-boggling. First, we review where we were, now we go over where we are and blah blah this test and yadda yadda that test. The amount of time and energy spent observing and testing Captain Adventure was a bit astounding really, as was the fact that he put up with it – and apparently did so with a relative amount of grace, since everyone who had put the screws to him commented on his “cheerful, cooperative” nature. (Um, wait, are we sure we’re talking about the same kid? Because he kicked me in the face last week when I was trying to transition him off the Wii…and ‘cheerful, cooperative’ are not the words that come to mind, people.)

At some points, it seemed like they were just looking for ways to make me cry. Because you know what can kind of set you off? Things like test results that show your six year old is functioning at < 3 years (or in other words, “falls off the bottom of the chart”) in such-and-so categories.

I don’t care that if you turn your head sideways it’s totally an Internet ‘heart.’ It still kind of breaks mine…in some ways, precisely because I can’t argue with the assessment. There are definitely areas where he is not keeping up with his peers, especially in the social / communication arenas.

Autism is mean that way.

On the other hand, he’s also got things like, scoring 120 on a weighted IQ test,that’s right…my boy? SUPER genius. (In certain categories, when tested in a way that leans heavily on his really keen hand-eye coordination and mathematical tendencies. Terms and conditions may apply. See store for details.) (…wait, what?…OK, possibly? I have been watching too much TV lately…)

He’s also got areas one area where he shines like the sun, and that would be math. He’s doing second grade work. Lemme say that again: My “disabled” son? Kickin’ patookis in the math, baby. He’s doing work that seven year olds do not grok. He can do column math. (Without the ‘carrying a one’ part, though…he’ll add together 27 and 14 and come up with 311. But then he KNOWS that ain’t right, which, I mean, you go, boy! He just doesn’t know what to do about it yet, and so far has resisted my attempts to show him because what do I know, I’m just a mommy, it’s not like I’m a teacher or something…)

They didn’t test for it, but, he can also subtract. I’m just sayin’. (Proud momma syndrome: Check.)

These Official Meetings always make me feel fearful. Irrationally so. I fear both sides of the coin. I’m afraid they’re not going to find that he’s made progress, and I’m also afraid they’re going to find “too much” progress – and cut his services. I’m afraid they’re going to challenge his speech therapy, or tell me (gently, I’m sure) that he’s not nearly as high functioning as we’ve been assuming. Uhhhhhh, yeah, he’s not EVER going to be anywhere NEAR a mainstream classroom, I can’t imagine why you’d ever think he WOULD be…

It’s a constant juggle for me, trying to balance reality and hopes, dreams and limitations. To accept what is without leaving off the therefore that follows it.

To be realistic about things, but nevertheless shoot a little higher than reality suggests is prudent.

Which naturally leads to this IEP anxiety, I guess. I don’t really want to know how far off base I am, when I look at him and try to envision him out on his own in the So-Called Real World…working…laughing with friends…falling in love…mortgage, minivan, Denizens of his own…

I don’t want to know that he’s no, really right smack in the center of average for kids with his diagnosis. I want to believe that he’s not, that he’s barely only sort of possibly MAYBE in the bucket.

But I also don’t want to have him yanked away from the excellent help he’s getting right now, either. I don’t want anybody to actually say, “Oh, no, he’s fine, he could totally just go right on into a mainstream second grade classroom next year, la la la, everything’s awesome!” – because that is so not true, either.

So naturally, I’m not going to be happy either way, right? No matter what they say, pretty much, I’m going to find something in there that makes me some combination of anxious, sad, angry or just plain contrary. Nuh-UH! That’s just STUPID…!

But overall, our news today was good. His speech remains garbled enough that speech services are deemed necessary (whoopee). His track record with post-time-off behavior remains bad enough that he continues to receive inter-session classes (um, yay?) (I mean, really: On the one hand, he needs it and I’m glad they give it to him, but on the other hand it’s like, “Oh yeah, whenever he’s just home with us for any length of time, he goes completely feral and it takes, like, two weeks for his teacher to civilize him up again”? What does this say about my parenting, people?!) (actually, it’s kind of cute how hard they try to make it not sound like that…well, by nature, the home environment is more chaotic, and that’s actually GOOD, because blah blah blah…, and of course I’m thinking, …heh…you people have NO IDEA what kind of chaos goes on at my place…! and then my husband usually jumps in and starts blabbing about what-all kind of crazy goes on around here and I’m kicking him soooooo hard under the table and then I’m wondering why the psychologist is yelping like that, and…oh…ummmmm…)

It’s a bit humbling, really. There are so many people gathered there who are all working with him, one way or another. People who put in hour after hour helping him navigate his way toward a more mainstream life. People who, moreover, have helped him blow his nose, or change out of his pants when he had an unexpected accident, brought on by distraction or, more precisely, intense focus on something other than his body and its signals.

People who go over the same things with him, slowly, again and again, trying a hundred different ways to say the same thing, looking for that elusive key that will open the door for him.

Never giving up. Coming at it again and again and again. Putting up with him when he’s in one of his foul moods. Helping him find better ways to deal with those irritating “emotion” thingees, that so often come at him from nowhere and leave him flailing for a way to express himself, or even understand himself.

It still just amazes me, that other people willingly put up with all the crap our special needs kids will dish out. That we live in a time and a place where we aren’t expected to lock them in a room away from the “regular” people and pretend they don’t exist…or ditch them on a snowy hillside to die of exposure for the good of the tribe.

I’m still so grateful for them, each and every one. I’m aiming unreasonably high for my boy, and they’re right in the court with me saying, “Sure, you could totally make that shot! Just follow through more on the throw, but don’t flick your wrist like that, you’re sending it off to the right a bit…”

It’s good to have so many coaches, and cheerleaders, working with us.

Even if the meetings do occasionally go on (and on, and on, and on) a bit…


Rena said...

It really is incredible how many wonderful people work so hard for our kids. And it's not like they're doing it for the money (if they are, their masochists). IEP always make me nervous, even though they generally turn out okay and Queen Teen continues to get excellent services and a good education. Still, sitting at that table surrounded by all those "experts" talking about my child makes me sweaty and cranky and tearful and happy, all at once.

IEP = Intensely Emotional Parent

love you, Sis. You are such a great mom.

Anonymous said...

I am so amazed at the fortitude and humor with which you deal with your and Captain Adventure's life. Because that's what it is LIFE - its yours, its his, its your family's - and you all deal with it because, what is the alternative? You aren't going to leave him in the snow. As my mom always said, you deal with what is given you in this life. (Or you fight it and go kicking and screaming, but you still have to deal with it - so might as well make the best of it [it took me awhile to find out mom was right] I guess I didn't know everything at 21) Anyway - I appreciate your sharing.
Nancy FP in Ferndale

Anonymous said...

DO you read Sheepish Annie? It's a blog by a middle school special ed teacher.

You might really enjoy it.

BarbOutsideBoston said...

Speaking from the teacher point of view (and I am not a SE teacher), this makes my heart feel full.

We feel so grateful you let us spend time with your children and reading this makes us feel so appreciated.