I have kind of a shameful confession to make. For now, for just this moment in time, maybe just this day or even just this morning, I need to stop.
I need to stop getting on Facebook and linking to something outrageous. Last week, in addition to all the other stories of the world being harsh to people with disabilities, I came across the story of a school district in which a teacher had abused a student in a designated “quiet” room, which he was using as a place to mock and punish the student instead of de-escalating his sensory overload, and in which that teacher had gone unpunished until the local media got involved, and wow, what an awful story, and I’m glad that kind of thing doesn’t happen here OH LOOK, THIS HAPPENED IN MY DAUGHTER’S SCHOOL DISTRICT, HOW NICE.
And I just had to stop reading.
I need to stop fighting with Schuyler’s special education team over wording that everyone else agrees should be in her IEP, wording that we have begged and bullied and bargained to have included, but the team leader keeps dodging and zig-zagging and adding everything EXCEPT the simple wording that needs to be added, and for the life of me, we can’t see any other reason for this other than the stupid yet omnipresent territorialism that comes when you take human beings with the same emotions and egos and frailties as the rest of us and put them in charge of the educational lives of kids with special needs. If I can’t have fair teachers, I’m at least waiting for my impartial robot special educators. Sadly, the district has yet to invest in the SpEd-a-Tron 2000, but I’m patient.
I need to quit worrying about the people who are supposed to be helping our kids but aren’t, or about the society that should be opening doors for them but is politely but firmly closing them instead. For just a little while, I need to step away from the fear, and from the sense of injustice and from the feeling that I am growing old at a far too rapid pace and that time is running out for me to be able to fix everything for my little girl before I go, because goddamn it, that’s what fathers are supposed to do.
I need to find a quiet place today and just breathe. I need to let go of all the crap and just let myself imagine a future where no one is low-balling my daughter and she’s not being subjected to tests or procedures that shackle her and no one gives a damn about the color of her wristbands or whether helping her is going to diminish their sense of being The Person In Charge.
I need to simply see how things might just work out for my little girl who is not a little girl anymore. I need to imagine a big picture, a life Schuyler lives on her own, where she goes to work at a job that fulfills her and comes home to a young man or young woman who loves her and maybe even understands her enough to want more, and where she loves her mom and dad but doesn’t need them quite so much as before, an idea that once was bittersweet but is now honestly the thing I dream of for her above all others.
I need to tag out, if only for a little while. I will probably have tagged back in before you even get around to reading this, because the dirty little secret of special needs parenting?
You get to tag out when you’re dead. Before then, suck it up, buttercup.
Note: To support the site we make money on some products, product categories and services that we talk about on this website through affiliate relationships with the merchants in question. We get a small commission on sales of those products.That in no way affects our opinions of those products and services.