Restless Nights: A Mom’s Case of IEP Insomnia
As I can’t sleep, I’m trying to figure out how to describe the pressure and fear of attending an Individualized Education Program (IEP) meeting as a parent. I understand it’s a legal document that can be amended. But for me, there is so much emotion balled up into that document. It carries every piece of my child’s struggle since his autism spectrum disorder (ASD) diagnosis. Every tear. Every fear. Every worry. Every loss. Every stumble. It’s impossible to separate the angst and turmoil of the past with the joy of the present and the concern and fear of the unknown of the future.
It feels like every year wanting to make the best quilt for my child, knowing that he’ll need to be kept warm when I’m not there to guide him and snuggle him. But all the people making pieces and squares for the quilt are bringing their own swatches and fabrics the size they feel he needs (hopefully driven by data they’ve accumulated that help to predict how cold he gets and how much coverage he needs).
And as I sit in this meeting with all these people who have brought squares for his quilt, on the fly I’m trying to stitch them together in my mind. Will it be enough coverage? Will his whole torso be uncovered? Or an entire limb? Or just a foot? I want to look into a crystal ball to know if he’ll grow a bunch and need an extra square foot tacked on or whether there will be a huge winter storm that requires an extra layer.
But I can’t foresee the future or accurately predict and control everything. So I’m holding all these pieces of the quilt and hoping and praying that it’s enough. That all these professionals aren’t going to leave his quilt in their drawers or on their shelves. That the people who aren’t at the meeting won’t forget to use that quilt when my son is with them. That the whole team of people I don’t even know for next year will effectively use the quilt that was made without their input.
That they will use it to cover my boy and protect him when I’m not around. Because chances are, I won’t always know if he’s still cold at school. Or in that certain class. Or especially at lunch and recess and music and gym and on the bus. And if I do find out that his quilt is too small, even in one area, it might be because something tragic happens. In my mind, I know the quilt can be altered. But it’s a lot of work. And I want it like Goldilocks…”just right.”
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So there’s a lot of pressure I put on myself. Which might be why sometimes I look like a helicopter mom or a spazz. Really, I just want to be the best advocate in what feels like an impossible situation. I have to trust a lot of professionals to do their job well, even when I am constantly worried that I am failing at mine: to be the best mom for him. I want guarantees when there can’t be guarantees. I know that I’m going to be told all the deficits and weaknesses of my child, and even though I am already well aware, it still cuts like a knife. It’s rough. Even under the best circumstances, it’s brutal.
I completely understand that IEPs are not a picnic on the educators’ side. But there is no way for us as educators to understand the depth of life and struggle that the parents might feel in that room. At that table. Ever. And today is my day to be that parent.
This article was featured in Issue 76 – Raising A Child with Autism