The Numbers That Matter

December 18, 2017 developmental delays, Education, IEP, Megan V., public school 5 Comments

Today we sat across from a table full of people in the conference room of our beloved elementary school, screen full of numbers and goals. They were so kind, so tentative, explaining the testing process to us and how Maggie fared in each category.

She’s behind. Universally behind and the numbers didn’t expose anything we didn’t know going into that room.

But they were so sweet about it, almost apologetic. She tries so hard and is the sweetest girl, they said. She makes everyone around her happy; she makes us all happy, they said. And so they finished highlighting what we already knew: she is behind. Just that. She is.

Most of her categories showing her to be at a 3.5 year level. They laid out the findings like wares at a market, wondering if we’d buy, wondering how we’d react seeing it in black and white. They were so kind.

At the end of the test-result section of an IEP comes the what-are-we-going-to-do-about-it phase. But first, there is a box to be filled in with parent’s concerns and reactions. This must surely be when these dear teachers and test-givers brace themselves for backlash, questioning, tears even maybe. This is probably not their favorite part.

And we, as the people who loved her best, didn’t disappoint with the tears. Lip trembling and emotion written across my face, I looked at that screen and said this,

“You must brace yourselves at this point in the IEP for parents to be sad or angry or argumentative. We are none of those. Because what you need to know is that four years ago, when we thought we were adopting a little girl with cleft lip and palate, our agency sent us her medical file with the directive to read it, meet with at pediatrician who can consult on it and interpret what it will mean before we committed ourselves to her.

And that file? It contained a comprehensive report by an American doctor who reported that Maggie’s head size was not compatible with brain growth. Who believed she would be in a semi-vegetative state and would never walk, talk, potty train or be able to experience any kind of measurable cognitive growth. She recommended that Maggie not be placed for adoption, but would perhaps be better placed in an institution. And then she sealed it with her signature.

And our dear friend, a pediatrician, sat on our deck that warm summer day, tears in her compassionate eyes and Maggie’s file in shaking hands and concurred. She was broken to deliver this news to us, that was clear. And we were broken to hear it, spent six agonizing days wrestling with the Holy Spirit about whether he had called us to adopt A child or THIS child.

And then we signed. And when they put her in our arms, limp and lifeless, no expression on that blank face, our worst fears were confirmed. I spent the first three days we had her sitting in a chair in our hotel room, dribbling formula into her little bird mouth with a spoon because she was too weak to even suck, her teeny body lifeless in my arms.

So those numbers up there on the screen? They are a miracle. And as far as we are concerned, her life began when they handed her to us three and a half years ago, so frankly, your findings are spot on.

You say she is operating at the level of a three and a half year old? That is because, for all intents and purposes, she is a three and a half year old, this 28 pound five year old girl of ours. Which means she is exactly where she is supposed to be.

We are thrilled. We will always be thrilled with the numbers because we signed our names on a paper four years ago, locking her in as our girl, knowing that medical science saw her abilities as zero, her potential as zero, her life as zero.

Those numbers up there? Miracle.

For those of you warrior parents who have spent this fall at those brutal IEP meetings hearing findings that made you ache, take heart in this truth: your child is exactly who they are supposed to be. Just totally, fully who they are supposed to be. And whether they are cognitively or socially or emotionally nearly half their bio age or leaps ahead, matters little.

What matters is that they are home and in your arms and that it is forever. Which doesn’t make the day to day any easier, holy smokes it doesn’t, but let it soak into your heart that perhaps our goal here isn’t to raise Rhodes Scholars, but to welcome in sons and daughters. That family is more precious than degrees and belonging will matter more than any letters they accumulate behind their names someday.

So you sit at your IEP meetings, looking at those numbers and you want to throw out some of your own. Numbers like how many days you waited to bring this child home, wringing hands and heart as the time dragged on. Or how many dollars were raised by a community as committed to bringing your child home as you were, even when giving cost them dearly. Or how many beats per minute your heart beat as you sat in that room waiting for a first glimpse, your heart like a drum in your chest. Or how many people dragged themselves out to the airport at all hours to welcome you home, you and your precious new one. Or how many nights it’s been since you’ve had your bed to yourself, unoccupied by a child who is sure they will wake up tomorrow totally alone and it will all have been a dream.

Those are the numbers that matter. And you are killing it. You are.

So here’s to you, IEP parents. And those without them. You are doing the hard, beautiful work that you have been called to do. And you. are. crushing. it. Carry on, brave mamas and babas. Carry on.

5 responses to “The Numbers That Matter”

  1. Michelle says:

    Simply beautiful!

  2. Debbie says:

    This article should be required reading for all members of IEP teams. And for parents before they go into the meeting. Thank you. Congratulations on the adoption of your daughter.

  3. Sue says:

    Every parent should read this. I agree with Debbie’s comments. Thank you.

  4. Trenasmc says:

    Thank you from my heaet.

  5. Louisa says:

    Love this….such wonderful encouragement

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