Monday, November 2, 2009

Starting from Scratch

I've put off writing about the three-hour meeting we had last week with a special education advocate. For one thing, note that number. Three. Hours. Plus. For another, it was a devastating meeting. Not in the literal sense. Nothing was physically destroyed. But there was definitely emotional rubble afterward. There is definitely rebuilding to be done. And the good news is that there is hope that it might get done correctly this time.

But enough with the allusion and lack of specificity. Here's the upshot. I walked out of there feeling almost elated, and definitely light headed. There was so much to think about, so much to rethink. I got into my car, drove about two blocks, calmly pulled over to the side of the road, put the car into park...and then plunged my head down between my knees, in the hopes that I wouldn't actually, completely, pass out. I didn't. I stayed that way for a while, then straightened up and drove back to my office, where I finished writing a press release before going home for the evening.

Rebuilding. Hope.

There is too much to explain. There are too many personal, complicating event. Too much that would require backstory. But there was one, somewhat simple, moment. A moment of what may have been the most absolutely clear ephiphany that I've ever experienced.

We were sitting talking about various diagnoses, various ways that kids qualify for for special education services. Baroy's listened to me do this sort of strategizing long enough that he was playing the game right along with us. I talked a little about "needing" N to be diagnosed XYZ, hoping that we could "convince" a doctor to go along with us, because without ABC or DEF diagnosis, we'd be up a creek.

The advocate started talking to us about taking N to one of the very few kinds of doctors he has not yet seen. (There are reasons for that, but let's put those aside for now.) We talked about the various kinds of diagnoses this sort of doctor might make, some very specific, some very general.

"So, with a GHI diagnosis, we'd be able to qualify him as JKL for the IEP?" I babbled.

"Well," she replied, "I think he may actually fall under the more general MNO, though I'm not a child psychiatrist, and that's not the point here."

We clearly weren't listening. "Ah," said Baroy. "So you want us to get him an MNO diagnosis rather than a JKL diagnosis so that we can get PQR services from the school district, right?"

She was quiet for a second, looking us both straight in the eyes, and then said, quite gently, "I want you to get the diagnosis that fits him," she said. "So that you can help him. Period."

And it was then, in that gentlest of reproaches--in that simple reminder of what the goal is here--that I almost literally felt my world lurch slightly, then settle back into a slightly different orbit. I've spent the past two years chasing the sorts of diagnoses that I was sure would be my golden ticket into Willy Wonka's Learning Factory. Reality be damned; all I needed was a particular diagnosis, true or not, to get my boy the best the school system has to offer. (Parents of sped kids...Did you find it hard not to snort at that point? Can't say's I blame you.)

What got left in the dust was nothing more than...N. He's "complex," as the advocate said many, many times that day. "In all my years of teaching, I've never met anyone quite like N," his various and sundry educators have said at one point or another, almost to a man/woman. "He's quirky," we say. "Uniquely N."

And yet, it is just that uniqueness that we'd lost sight of, of late. What should we want him to be? we'd been asking every expert and knowledgeable parent we could find. But it was the wrong question. It's not what we want him to be, now or in the future.

It's what he is. Today. It's searching for his authentic self or, better yet, helping him to search. It's figuring it out without having a goal in sight and pushing everyone around me toward it. It's letting go. It's letting N be N. Helping him to be the best N he can be, but recognizing who today's N is, in order to figure out how best to deliver him safely into the arms of the N or tomorrow.

It's hard to admit how far from that path we'd strayed. It's hard to say how truly hopeful I am that this simple mindshift is going to make all the difference in the world. We may still have to fight the school system every step of the way--indeed, as suspected, we may actually be further from the coveted set of "every intervention possible" rules we've been playing by all this time.

It'll be weird to go see a professional, have them evaluate my son, and not have an arm's length list of the sorts of responses I'm looking for. It'll be weird to just listen, and consider, and maybe reject...but maybe not.

It's dizzying, it is. Head between my knees dizzying. But I have faith. I have faith in N.


Anonymous said...

The most important thing you learned: There is no golden ticket. Dx or not. And Willy Wonka is a work of fiction.

It sounds like your advocate is a gem. And I'm so pleased you have such a capable, caring and respectful guide.

I'm sorry it's so hard. Sending hugs. And an ear, anytime.

Jordan said...

Such bravery to stop and take stock, rethinking it all. And the fact that that lead to some new hope is wonderful. Good for you - all!

Niksmom said...

"I want you to get the diagnosis that fits him," she said. "So that you can help him. Period."

It all becomes so much simpler (note, I did not say EASIER!) when we maintain that focus, doesn't it? Yet, our schools do seem set up to engender the whole Willy Wonka mindset.

So glad you have found someone, who not only sounds smart and competent but, who is caring as well.

Meg said...

Beautiful post. It is really hard to stop believing that the proper diagnosis will lead to the perfect learning program which will solve everything. Diagnosis is often difficult, especially when the several mild issues may co-exist. Also, even the right diagnosis may not lead to easy answers. But there are ways to help, to pave the way for N to be the best N he can be and you are doing your absolute best to get him there.

po said...

I never thought of it in terms of Willy Wonka, but yes, that's exactly how it felt. Chasing the magical key that would open the door to all the goodies that would make everything all bluebirds and happiness. I did it the first time we got Matthew's dx, and he got services (and I walked around for years telling people "all the doors opened once we had our diagnosis"), and I did it again the year before last when I fought for his out-of-district placement.

But you're right: it's the child, the person, not the diagnosis. There's actually a t-shirt that reads "I Am Not My Diagnosis."

Hugs and wishes for, if not a golden ticket, a bit more clarity on how to help N.

Ambre said...

So maybe instead of finding "the" golden ticket, you need to focus on finding the path laid out before you. Every step of the way, you need to make sure you're still on the path.

But the secret to making sure to look at the child and not the diagnosis is to not look at things in isolation. Never look at the delays without also looking at the strengths. All a diagnosis is is an arbitrary grouping used for research and treatment- but yet those arbitrary groupings are helpful for determining which services a child needs.

Leightongirl said...

You're a great mother. N. has an amazing set of parents.