7:32pm June 23, 2014

Things I wish my parents and teachers would have known

youneedacat:

walkingsaladshooterfromheaven:

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.

It sounds like that same old problem that you have pointed out many times, where too many of the people responsible for what programs you should be assigned to fell into that trap of assuming that certain kinds of skills are automatically connected to certain other kinds of skills. I think because most people only really have one basic model for how people grow and learn skills: and that’s the model of a non-disabled person learning as they grow from infancy to adulthood where most people learn certain kinds of skills in a certain order. Some of the skills may NEED to be in a certain order (at least for some people whose brains are wired in certain ways) in that most people may need to, for example, learn to read individual words and understand what they mean before understanding sentences and paragraphs. (With obvious exceptions for many various types of disabilities, but here we’re talking about what most people assume to be the “norm” which fails to account for those exceptions.) And then other skills may just happen to come in a certain order because the physical growth and maturation of the brain typically enables certain skills to start being learned at certain ages and not before. (Certain parts of the brain, such as the part that controls executive functioning, do not stop physically growing/developing until we are about age 35! At least for most people. And certain skills cannot really be learned, or at least not as well, if the parts of the brain we need for learning them aren’t finished growing.)

And then you have people who go into special education and learn a second model for how people learn skills, which is the way that non-autistic people with intellectual disabilities and global learning delays are assumed to be learning and developing, which many people assume to be still the same as the basic model just happening much more slowly. Which can create its own set of problems, including assumptions that just aren’t true such as the assumption that emotional maturity is necessarily going to develop as slowly as a person learns new skills. People don’t grasp that emotional maturity and ability to make sober assessments of one’s situation to make responsible decisions and so forth are just processed differently in the brain and might not be hampered in the same way that a person’s ability to, e.g., learn a bigger vocabulary or learn more complex math skills is affected by their intellectual disability.

And then,most people don’t grasp the concept that the “usual order” of learning just doesn’t happen for some people, you might end up with skills being learned in very “unexpected” patterns and orders (“unexpected” for a person expecting it to be the same as people without disabilities). It’s like that problem with the concept of “mental age” where people think they can extrapolate what you can and cannot do by knowing your “mental age”: if you’re mentally five then surely you cannot read or tie your shoes but can go potty independently, and if you’re mentally 14 then surely you are ready to start learning algebra and have no difficulty with basic self care skills like hygiene or throwing together a quick afternoon snack.

And of course the concept of “mental age” doesn’t really fit properly even for people who DO learn in the “usual order” (just more slowly). And it is even further out of whack for people who learn skills in a very different order than most people do. But the programs out there for people with disabilities are still stuck in that basic model of “mental age” (maybe not that exact terminology, but the general perceptions and world views that are behind the concept of “mental age”) and aren’t designed with enough flexibility to account for the fact that “mental age” is a misguided concept for pretty much everyone.

All of this being a long way of saying, sorry the system sucked so bad for you. I hope they manage to fix these systems so they meet the actual needs of people in them better in the future. Wish there were a way to fix it for you now.

And re your other post on communication: I know not the same thing, but I can remember trying to make phone calls in the days before video relay service, when I still had to type everything out via text phone relay service. And sometimes people would yell at me over the phone for being so slow and “uncooperative”. And I would try to explain that the reason this is going so slowly is because I have to type and typing is slower than talking, and then the relay service person has to type everything you say back to me which is just as slow. And so often they didn’t seem to want to grasp the concept that the slowness of the conversation really was completely out of my control. Things are mostly better now that video relay service lets me access the phone via video phone connected to a sign interpreter, which is so much faster than typing. But I can still remember the frustration of being yelled at for things I couldn’t help, and sometimes being hung up on for being “uncooperative” when I was already doing the very best I could to accommodate them to the extent the technology back then would allow. And it sucks.