There is a level of gratitude so rare that it is nearly impossible to describe. It is so deep and so profound that it reaches into your soul, digs in its tendrils, and squeezes until you cannot breathe or think and all you can do is fall to your knees. Fall to your knees, curl into a tight ball, and breathe gratitude into the air around you. Everyone has a different threshold for that kind of gratitude, and I’d say it changes based on the situation. If I’d been ill and had just gotten a clean bill of health, that would absolutely be this level of gratitude. But sometimes it’s an improvement on something that had been so hard for so long and now it’s not and my god the change is stunning and you just…fall to your knees.

Because that is all you can do.

This past weekend the SENG conference was in Chicago. I attended and presented, but this year, because of the close proximity to home, Andy was a volunteer. He helped out whenever and wherever the organizers needed and was happy to do so. I never saw him without a smile on his face, just doing what needed to be done. (Kid badly needed a haircut, don’t know what the hell his mother was thinking…I need to have a talk with that woman, she’s raising him weird). This complex 2e child who had me rocking under my desk sobbing more than once in the last dozen years stepped up and volunteered for the organization that was most responsible for his parents getting him to the point that he could step up and volunteer. He was courteous and helpful and prompt and responsible and polite and kind. So, SO many people knew him and knew his story from this blog, and yet he was not embarrassed by it, and in fact played along with that fact. “Yes, hi, I’m A and you all know me.” He made connections and shook hands and took business cards and has ideas and projects lined up. Of all the people who attended the SENG conference this weekend, I am convinced Andy left the most changed.

And I fall to my knees.

I curl into a ball and breathe gratitude into the air around me.

I do not rock and sob under my desk.

Instead there is a new sensation, that of curling tendrils of profound gratitude weaving their way into the deepest depths of my soul. The infant who rarely slept, the young child who would routinely lose his shit, the schoolboy misunderstood by educators, the kid struggling to make sense of his world…had coalesced into this amazing young man in front of me, strong and sure because of the struggles he overcame.

I hardly know what to do, I’ve been so accustomed to challenges with this kid, that all I can do is give thanks with every breath. These improvements have been building over the last couple of years, positive incremental changes occasionally alternating with setbacks, but this weekend provided the outside perspective I so needed to see how far he really has come.

Next year SENG is in San Diego and I have been informed, in no uncertain terms, that he will be attending even if I do not. Guess I know what our family vacation is next year; maybe we can roll a few college visits into that trip.

When the days were dark and my child was suffering and I couldn’t see how things would ever get any better, I rocked under my desk and sobbed.

Today I fall to my knees, curl into a tight ball, and breathe gratitude.

<General sibling bickering. This is the soundtrack of my life these days.>

Andy: “…well, because I…Mom, what is my IQ number?”
Me: “Oh dear son, I know your number and I am not sharing it with you.”
Andy: “Why not? I deserve to know!”
Me: “For this very reason. Your IQ number is just that, a number. It doesn’t matter what your number is, what matters is what you do with it. What matters is how you treat other people. What matters is how you lead your life. Not some number.”

And so it began.

He asked me about his IQ score a few years ago. Yes, I do know it, and no, I don’t plan to share it with him any time soon. I’m thinking adulthood, maybe. I kinda put IQ scores in the same category as the number on the scale when I climb on: it’s good to know, because reasons, but for the love of sanity I do not base my entire reason for living on it. I know how much I weigh, I know it’s a much higher number than I’d like, but it does not define me. Andy’s IQ? I know what it is, I know it would probably surprise people, but it does not define him.

I believe that IQ scores have their place. I think they can help kids and their parents search out the resources they need. I think they can open doors that might otherwise be closed and locked. But I don’t think an IQ score is the be-all end-all holy grail, or something a helicopter parent can “buy” from a sympathetic psychologist (something a school official once told me).

It’s just a number.

That number isn’t going to get my kid into an elite college or earn him the career of his dreams; his hard work will do that. That number won’t get my kid a partner or spouse; his loving and caring heart will do that. And that number won’t earn him the respect of others; only reciprocal respect and honesty can do that.

It’s been awhile since Andy originally asked about his IQ score, and he hasn’t asked again. If I had an IQ number floating around out there, I don’t know if I’d want to know it. Even if I were to somehow get tested now I’m not sure I’d do it. I already feel like I don’t live up to my potential in many ways, I sure as hell don’t need a number mocking me further.

~~~~~~~~~~~~~~~~~~~~~

I started this post a few years ago, and it’s languished in my drafts folder collecting cobwebs ever since. But despite its age and wrinkles, suddenly it’s a little more relevant. This spring Andy will be undergoing his third (yes, THIRD) neuropsychological evaluation. It’s not as though we big puffy heart sending our oldest son for several days of intense testing, or have money that’s tired of the coziness of the bank. No, we’re staring down the barrel of college entrance exams (hold me) and the probable need for accommodations in college (tighter, please hold me tighter). Thankfully we already have a paper trail with his previous evaluations, but nothing recent, hence the new testing.

Homeschooling for the last five years has been a profound blessing, and I don’t use that term lightly. It’s allowed our son to proceed at his pace, and to grow in a way many teens don’t get a chance to do. He’s learning time and project management skills that I didn’t have until college, and has a strong sense of self you don’t often see in teens. But because he’s been “off the beaten path,” there is no official proof of the challenges we’ve been doing our best to manage for the last half decade.

With the new testing comes an updated IQ score, and despite my strong belief that it’s just a number, I’m worried about what that score will be. Actually, not so much the number as the extensive written report from the testing. When you live up close and personal with twice-exceptionality, it’s like living with a funhouse mirror in your bathroom. Everything is magnified and distorted from your point of view, and sometimes you need someone else’s eyes to help you interpret what you’re seeing. There are strengths that have become so common that I no longer recognize them as exceptional; will the testing indicate that these strengths actually exist? There are challenges that are so draining that they seem to overwhelm everything and yet are still our normal; will the testing prove that they are there, and that they do need accommodating?

Will the testing support the 2e diagnosis from 2009, or have we been deluding ourselves for several years?

I know that it doesn’t matter, that my son is one hell of an awesome person regardless of what a report says.

It’s just a number.

Right?