31/2021

I sat through my 10th IEP meeting this morning. For those who don’t know, an IEP is an Individualized Education Plan — if your child requires special services or consideration, you have to have one, even if they don’t go to public school. It’s a grueling process — when it is decided that your child needs anything extra, the evaluations begin, then you go from there and you keep going from there each year, until they either progress to the point of no longer needing an IEP or age out of the school system. Each state and each school district has their own set of standards for what is and isn’t provided for a student who needs more services than usual, but suffice to say, those standards, no matter what state you’re in, are hardly ever high enough. Parents must advocate for their children, and most times that advocating requires a sheaf full of papers in one hand and the will to fight like hell to get the proper help for the problems presented in those papers in the other.

This far down the line, it’s sort of old hat to me. I know the language, I know the standards (which haven’t changed in ten years, mind you — even with all of the increases in need), I know the types on the other side of the ring with which I’ll have to deal, I know the divorce I’ll ask for from my emotions before the meeting begins. But what I can never get used to is the wave of grief I feel after the meeting is adjourned, after I am forced to say, every single year, that I do not agree with the committee’s recommendations for John Henry, that the placement recommendation is inappropriate, that the services they can provide at their dismal settings are not enough, that I don’t know why anyone who calls themselves an educator wouldn’t do the absolute most possible for every single child that has an ID number. I understand the need for standardization, but I also understand that standardization exists to categorize, to simplify, to ultimately reduce specificity. My son is nothing if not specific. The truth is, we are ALL specific. None of us is standard and none of us like to be treated as such — to be told, “this is all there is, no matter what you actually need,” is a blow that always takes the wind out of us.

I feel a lot of grief coming from everywhere these days. The virus, the fighting over ideologies, the discombobulation that so much information (correct and incorrect) brings, the paralyzing fear, the striking sense of absolutely blinding loss that we’re all dealing with in one way or another… I sincerely do not know anyone who isn’t bewildered by it all right now. No wonder people are quitting their jobs. Some days it’s hard to feel like getting up to do it all again, over and over again, adds up to much more than being a cog in the wheel or just meeting a standard. I feel like a lot of folks are struggling to find a reason to be that these days. The pandemic brought to us a lot of things, and to some, it brought the opportunity to ask why — why have I been living the way I’ve been living? Do I want to keep living that way? Why have things been the way they’ve been? We don’t want to be told this is all there is.

I went through that myself. I said I’d change the things that felt futile and let go of the racing around. I don’t know that I’ve followed through with any of it. But I’ll tell you what I did today that was different from any other day I’ve had to suffer through a meeting like I did this morning — I celebrated the process after it was over. John Henry and I took a drive, went to the park, climbed a lot of stairs to get our adrenaline regulated, then we sat on those stairs and looked out over the green fields and trees and into the gorgeous, blue, August sky. I cried — over the fact that he has to have an IEP at all, over the fact that he won’t not need one anytime soon, over the fact that some days feel like — I don’t even have the words right now. But after I wiped my tears away and kissed the top of his head, I whispered thank you to those who have cared so much for John Henry and who have done and continue to do the absolute most possible they can for him, I whispered thank you to myself for showing up day after day, and I said thank you to my son for being the reason for it all. What’s the saying? If you have a why you can endure almost any how?

Not every day can be spectacular. Not every day can even be good. Not every day can hold a super meaningful experience, either, no matter if you’re climbing mountains on each and every one. The thing to remember, I think, is not to make sure each day is lived to the absolute fullest, but to take time to recall why you ever wanted to live them that way. That spark is what will get us through. 

Sending love everywhere,

AM