3:50pm June 23, 2014

Things I wish my parents and teachers would have known

You cannot train people with impaired executive functioning to have normal executive functioning.

What we need is to be given the time, space, and tools to learn how to function *without* the executive functioning skills that neurotypical people have.

My brain operates off of impulse and sensation and the seductive allure of logical patterns. I can’t change that.

But I can learn to use it.

By setting up routines and environmental cues and sensory stimuli that work for me.

My brain doesn’t operate off the ‘seductive allure of logical patterns’, but it doesn’t operate the normal way either. And I could have been saved years – decades really – of misery, if people had stopped thinking they could train me to do things that my body won’t do no matter what, ever. Or worse, thinking that they didn't need to teach me anything because if I wanted to do it obviously then I would. It still makes me very angry that when I was put in special ed…

There were four main classrooms for people my age.

There was a life skills classroom that taught basic life skills, that I did not have, for the most part.

There was an independent living skills classroom that taught people less basic life skills, but ones that I also didn’t have, for the most part.

Then there were two classrooms that concentrated on academic skills, mostly ones that I either already had or that had no consequence in my future.

I belonged in Life or Independence, based on my actual skills.

Instead I was placed in the highest academic class because I’d been to college and that was all that mattered to them.

Which meant that I didn’t even have a chance to be taught these skills, outside the home, by people who were supposedly expert in teaching them to people with developmental and psych conditions.

Not that I think they’d have been able to teach me even then.

But they didn’t even bother to try.

Because the criteria for being in each classroom was not about what you could and couldn’t do. It was about what you looked like, superficially.

And if you had been to college, then surely you couldn’t need help with the most basic of basic life skills.

Except I did.

I spent time in both Life and Independence as much as I could because I belonged there. Socially, I was on the same level as the people in those classrooms generally – they could interact with me in a way I could not interact with people in my own classroom or the other academic one. And they were learning skills I needed to learn. And so I spent as much time there as I could and nobody bothered to wonder why.

When I got my own apartment, I remember calling up my counselor from special ed and screaming at her about why she hadn’t bothered to put me in a classroom where they had even tried to teach me the barest scrap of a daily living skill. She had no response. She wouldn’t even talk to me about it. I was furious.

Because I was living in filth. And I was starving. And my apartment was piled high with garbage and stuff. And mold. And I was peeing on the floor. And I got lost in a one-bedroom apartment with giant windows between the two rooms so you could see everything. And I’d fall over and not be able to find “up” again. And I couldn’t function without someone walking me through every single tiny tiny tiny tiny tiny step of movement in order to do a task.

Which means that I needed more help than a lot of people in Life, which was the “lowest functioning” classroom in my school.

And they had not done a fucking thing to assess or predict this problem.

Not that I think they could’ve taught me how to do those things. But they could’ve tried. And they didn’t even do that.

The institutions tried, and failed. They put me on ADL (Activities of Daily Living) programs that helped me not at all. But they at least were trying. They at least recognized the magnitude of the problem. They recognized that I couldn’t shower or wash my hair or cook or brush my teeth or eat or any of those things, without help, and they were trying in their misguided way to help.

But school? Nope, if I had academic skills then I couldn’t possibly end up in the hell that I ended up in when I first moved out on my own.

Still angry, to this day.

Notes: