I was in discussion with someone who wanted to read about the process of getting accommodations from the student's point of view, and realized that I didn't have any links of this. I didn't know of anyone who had written up what this was like for them. But I could write up my memory of getting a 504 plan, even if most people would want to know what it's like to go through getting an IEP.
For me, getting a 504 plan was people deciding this for me. Things were too much. I kept being overwhelmed by things being too much. It was at the point where my disability was annoying for others, and where people couldn't pretend I wasn't disabled. It was at this point where I was going to a different school, and going to one which cared enough about me to provide accommodations when they realized I was over my head because your grades aren't all there is to school.
I was in high school. Might there have been things that could have helped me before then? I don't even know. I didn't know abut the possibility of accommodations. I didn't know about the concept of me being disabled. It wasn't available as a thought, and looking back I have no clue what would or wouldn't have worked better, because so many people focus only on if your academics are good then clearly your time in school is good, when my academics were good, and my time in school was awful.
But at this point I was in 9th grade, and overwhelmed by people, and changing things, and feeling like I kept getting put in impossible situations. And at this point, it was seen that I was a disabled kid who should get accommodations.
So, my parents, the school counselor, and I went to a meeting in her office. I had a chair in the corner. I was allowed in the room, but I was off to the side. The meeting was about me. I wasn't part of it. I was off to the side.
They talked about me, what problems that I had, what things could help. I wasn't asked what would help. Others decided what would be good for me. If I wanted to add information I was allowed to, but it wasn't lets try to make them figure out what would be best and support them through this process by figuring out what is available, and figuring out what types of things might possibly help by how we know them. It was others talking about me and me having the option of adding things. And being asked "does that sound right", when I am someone who will just say sure, good, because of being overwhelmed, and wanting to get away, because it is too much, too long, need to get out of this meeting. I am someone who will say sure, because of not wanting to cause problems, not wanting to make things harder and more awkward and more work for others. The fact that it's about making things easier for me, about my accommodations, doesn't change my immediate reactions of but I can't cause you to do extra work. And if that isn't planned for and taken into account, then it will come up. It was people talking about me, and me saying sure. That works. And it being like it didn't matter that I was in the room, except that I knew what happened. And if anything really bad came up I had the option to say no.
But what didn't happen, was it wasn't people asking me. It wasn't people including me. What could have happened instead, was people trying to make it be about me. It could have been a place where people could teach people like me how to figure out what accommodations are accommodations I want because they are what accommodations I need. (I still don't know what would help for executive functioning, because nobody has ever tried to help me figure this out and I don't know how to go through that analysis process of what would help.) It could have been a place where people could have given me agency over what do I need, instead of me feeling trapped in a room knowing others were talking about me and wanting to run because of feeling so trapped. It wasn't that. It was people talking about me. You can do better. You need to do better. (And looking more general, I know so many people who reject accommodations because of their accommodations being done like this.)
And then I had a 504 plan, and it existed, and I didn't know much beyond that. I knew that meant that things that had been causing me problems weren't going to exist anymore because it was written down that it couldn't. But I didn't know anything beyond that. I was confused but didn't want to talk to anyone and didn't want to ask any questions and didn't know what questions I'd ask because it was like sure this is a thing, and not really explained to me. It was like, because I was there I didn't need an explanation because I would pick up the explanation. Or like it wasn't necessary because 504 plans are simple and thus don't need anything explained. But I just wanted to have the information because information is important to me and wasn't given it and felt like I would need to seek it out and didn't know how.
It worked out to be helpful and valuable and something I am glad happened. I'm glad I got accommodations. I'm glad I was seen as disabled and taken seriously as who I am. But, as a disabled child, I was talked over. I wasn't allowed to be equal. I couldn't talk about myself, others talked about me. I wasn't allowed to understand, because others understanding meant it didn't matter if I did. Things about me were about me by others not with me part of the process, and that has effected me years into the future.
And that is a problem. I should understand my own accommodations. To some degree that was taken from me by people denying me accommodations. To some degree that was taken from me by people choosing my accommodations instead of letting me understand and help figure out what it is that I need.
And who knows, I could have had accommodations that were more of what I needed if I was simply asked.
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