*** this is part two of the articles about our ventures into exploring, and coming to terms with, the things that were documented in our special education record. Note that some identifying details, which remained unchanged in the copies of the documents we obtained, such as room numbers and names, have been changed or omitted in this article to protect the privacy of the school we went to during that time. The rest of the quoted content has been recreated exactly as it was, with miner guess work being done as far as punctuation. This is not intended to be a personal attack or a misrepresentation of any person, place, thing, or action. ***
A “positive behavior support plan” is a document designed to lay out a plan of action to correct problem behavior. We knew that even before going in to collect copies of our special education records. We knew that even as we pored over them, and as the stories of other survivors of things like applied behavior analysis repeatedly came to our minds. We were all too aware of how harmful the whole concept was, both in theory and in practice, which was why we’d obtained the copies of our own documents in the first place. We wanted answers as to whether or not our memories were based in actual events, and we got more than we were looking for. Yes, we are angry. Why? You’ll find out.
After reading through, and reviewing, our third grade IEP, we began poring over the behavior plan that came with it. From the beginning, we were expecting it to have a load of problems, and that expectation was met and then some. The whole point of a behavior plan is to target one or more so-called problem behaviors and reduce their frequency, so it came as no surprise to us that our attempts at communication were seen as problem behaviors that needed correction. But what took us off guard was that those who wrote the plan were, in fact, aware of the overwhelming emotions that accompanied our outer actions, and had displayed this awareness in the opening statement of the document.
“When Maria is experiencing significant frustration, agitation or anxiety, she frequently flops down to the floor and throws a tantrum consisting of wining, crying, screaming, and flailing her arms and legs.”
This statement, at first glance, doesn’t look too bad, until it’s given some thought. This, on its own, gives the impression that we did these things as a voluntary act of attempted escape from an activity or from something else we didn’t want to be involved in. This could not be further from the truth. As we’ve said many times before, the behavior described above was the end result of our attempts to hold it together finally backfiring. We were doing all that because we couldn’t hold it inside anymore and all other things we could think to do weren’t working. It was anything but an attempt to get out of something, and in fact, when attempts were made to take us out of whatever it was we’d gotten anxious around, or about, in the first place, we would actively refuse to leave, once even going so far as to try to run back to the classroom. If we were truly having tantrums, we probably would have been more than happy to leave each situation in which we displayed all of those actions, but we actively resisted and/or refused. What does that say?
The “behavioral goal” of this particular plan is equally disconnected, and almost laughable.
“When Maria is experiencing significant frustration, agitation or anxiety, as demonstrated by tapping her feet, muttering, refusing to follow directions, short, quick body movements, etcetera, Maria will follow adult directions to take a walk to the copy room, or to room 90, to calm herself, on nine out of ten consecutive days.
Great! So, disregarding the fact that walking never did calm us, how exactly is that goal going to be met? Through reinforcement, of course! Here’s what that looks like.
“When Maria complies with adult requests, she should be verbally praised for acting like a nice third grade girl to revise her belief that adults view her as a baby.”
This logic makes no sense. Our belief that adults viewed us as a baby was based on the facts that they followed us seemingly everywhere, and that we depended on them to do even the simplest of tasks related to school work. It had nothing to do with times at which anxiety resulted in our meltdowns. Praising us for acting like a nice third grade girl because we complied with the wishes of adults around us did nothing to change that belief, and only gave us another reason to rebel against them in any way we could think of. On top of that, the out and out rejection of what we’ve already clearly indicated was, at that point, a part of us, could not be made more apparent than it was in that statement. We were to be praised for acting, not for being ourselves, not for being honest, not for being anything. Complying with the wishes of adults was good, even if we didn’t want to, and even if doing so would take away what we felt was the only chance at resolving the issue at hand. Complying meant we would be seen as a third grader, but not complying meant we’d be seen as a baby, no matter what.
We can think of several ways that adults could have changed this belief. None of them involve enforcing blind compliance. Those will be covered in our next article.
The ‘enforcement’ section went on to talk about how a third-party agency who was also providing us with one-on-one therapy/counseling services would be providing a “tangible reinforcement program,” which, in our case, was a token system. We began the day with two tokens, and, if all went well, we would get to keep both of them. If we exhibited any of the so-called problem behaviors, we would lose one, or both, of them. At the end of the last day of the school week, we would get to spend our week’s worth of tokens on items that were in a makeshift store, like stuffed animals or other small toys. None of that mattered in the moments when meltdowns were happening. We could not have cared any less than we already did about losing tokens or having our entire day defined as good or bad based on how many of them we still had by the end of said day. The only thing we ever felt, aside from neutrality and the occasional burst of pure and uncut rage, about the whole system of physical rewards, was that, aside from getting us some cool things, it was another way through which we could be controlled and manipulated into doing what others wanted of us.
The “strategies” section of the behavior plan outlined things we could do to prevent the emotions that resulted in the so-called problem behaviors. We could, in theory, name ten adults who we thought were on our side, take walks to work out problems, and take movement breaks to relieve anxiety and ease frustration. Sadly, the only thing we recall being used was the third idea, and that was done because the adults pushed for it, not by our own request. If the walks down the hallway and back were meant to be breaks during which we worked out problems, they didn’t do their job, and we’ve said that clearly already. As for naming ten adults who we felt were on our side, the idea, if it was used at all, would have proven itself to be an impossible challenge, because even then we could think of, at most, four adults who we liked, and only two of those four who we felt safe enough to share our true interests with directly. All of these things sound wonderful, but none of them were applied in a way that allowed them to do what they were supposed to do.
The “supports” section of the behavior plan outlined exactly what it said it would, stating that the same agency responsible for the token system would also “provide a full-time ISP (Individual service provider) for behavioral support.”
We remember the ISP quite well, mostly because we resented their presence in the room. We felt it was preventing us from having friends and that we were being singled out from the rest of our peers. As to what this person would be doing, that was outlined in the “Procedures” section, coming right on the tail of the “supports” one. It begins quite ordinarily, starting with this.
“A classroom teacher and visual aid will watch closely for signs of frustration, agitation or anxiety. When frustration, agitation or anxiety is being detected, Maria will be expected to follow adult instructions to use an identified coping strategy.”
Even if our options for coping strategies weren’t reduced to only one, taking a walk, this still has its problems. All we remember is not feeling safe enough to use other tools around people, particularly after this thing was implemented. Yes, we’re calling it a ‘thing’. This could have been the time at which the adults asked us what was wrong and waited for a response. We would have willingly given one, if we would have been given time and had felt safe enough to be calm.
Have we mentioned how, during that time in our lives, the “coping strategies” that were being recommended by others outside of us were frightening, because of the vulnerability they brought up? Have we said often enough that behavior is communication, and that we were already afraid of what might happen if we admitted to not knowing something, or being unsure of something? And they wanted us to expose ourselves to being even more vulnerable than we were? NO!
We weren’t refusing to breathe deeply, rethink the situation, or do anything else of that nature because we wanted to be an argumentative brat, we were simply, utterly, completely, scared!
The section continues as follows…
“the adult will use a low, calm voice to give Maria verbal prompts (“Time for a break.” “Let’s go for a walk.”)
To us, these prompts sounded rushed, and, as we’ve said in our last post, they became another way through which people we thought were supposed to be on our side could ignore our communication. Hearing those words consistently, when we were already feeling unheard and ignored, gave us the message that our best attempts at communicating weren’t good enough and that obviously, our thoughts didn’t matter, since we’d just be taken away from the place at which they could be talked about when they came up in a way that they could potentially be discussed openly. If we had had a sense that we could trust at least one of the adults who worked with us in that particular setting, that message probably would have been much, much different. But that sense of trust was not to be found where we needed it most, since neither of the adults we felt that way with were there in the classroom when feelings of anxiety were making themselves known. Ultimately, then, what we were left with was a group of people who, we felt, did not care about what was going on for us on the inside, and would rather ignore it than deal with it or help us work through anything.
“Adults should remind Maria that the braille room is a safe place to relax and that room 90 is a fun place to visit,” the plan recommended. To our knowledge, this was only done once, and the conversation in which it happened was more of what we felt was an attempt by people in power to pressure us into using coping strategies that we did not feel safe doing around others. Only one or two of the community’s insiders got anything from that conversation aside from that pressuring, and they mostly went into hiding after it was done.
“They can ignore us in our moments of need by insisting on breaks, even if we don’t want to take them, so why should we care what they want us to do, or how they want us to feel, as long as it’s not safe to let our guard down around them?” was the question that ran through our mind, and it became the drive for much of our lashing out in later years. Bringing it into the center of our focus, more than anything else, was the actualization of the rest of the plan, as described below.
Note that for the sake of simplicity, we’ve omitted the confusingly worded procedure that was to be done if we did not respond to verbal prompts, which involved a lot of notifications about the situation, to a lot of different people, including the principal of the school, our case manager, and the vision specialist, if they were in the building. According to the behavior plan, the case manager, or other trained staff members designated by the principal, were to “assume charge of the situation and act accordingly to a crisis plan.”
All this because we wouldn’t play their game. But wait, it gets better. after a note that states, “The classroom teacher and case manager will collaborate on all disciplinary issues in regards to classroom management,” and continues by saying, “the emphasis will be on positive behavior support,” the crisis plan itself shines in all its ‘we don’t give a crap how this affects you’ glory.
“In consultation with the principal, the case manager will assume charge of the situation, and will direct other adults at the seen using ‘MANT’ principles.”
Admittedly, we have no clue what ‘MANT’ is, but it clearly didn’t prevent any of the problems we face today as a result of the rest of this plan being acted upon. In our minds, whatever principles it was based on did not lessen the impact that it had on our mental and emotional health, and our lack of knowledge on this matter disables us from commenting further.
“the principle will provide at least one adult on the scene to monitor the situation from a safe distance (for safety.) After assessing the situation, the case manager will make a decision as to whether to continue to use verbal or physical prompts to physically assist Maria out of the classroom, evacuate other students from the classroom, or to keep Maria safely in place until her parents can arrive to remove her.”
Putting aside how poorly worded this small quote was, and yes, what you’ve just read/heard was, word for word, how it was written in the record itself, this disgusts us all, for multiple reasons. Let’s look back at the fact that yes, our so-called “problem behaviors” did have predictable causes. We weren’t wild animals who needed to be watched for signs that we were about to attack. We’ve already covered how we felt about adults, people in power, people who we hardly trusted and who we did not want to be able to access our vulnerability in any way insisting on attempting to do just that and being somewhat successful in their attempts, only to turn around and ignore us by basically forcing us to take breaks. This particular quote is only the beginning of the true extent to which those people in power were willing to go to ensure that we complied with their demands, despite the feelings and thoughts which we’ve already described having about said demands. If we didn’t comply independently, they were going to do everything they could to either force compliance or shut down the opportunity for resolution that had presented itself, our desires be damned. In other words, we’d better take that break…or else.
The document continues…
“In the event Maria must be physically assisted or restrained, or if the classroom must be evacuated, then Maria’s parents will be notified as soon as possible.”
At least they bothered to tell our family, not that our father was any better at handling situations like those. At least our mother responded to logic and cared enough about her child to understand that ignoring and discounting our communication wasn’t going to fix anything. Let’s keep going, shall we?
“If Maria must be physically removed from the classroom, she will be assisted by the case manager to the braille room to calm down. The principal and the case manager will determine when Maria is able to return to the regular classroom. Maria may remain in the braille room, or the case manager’s room, for the remainder of the day under the direct supervision of the case manager.”
Right…the case manager and the principal were to decide when we could go back to class. Not the child. We were to have no say in whether or not we were ready to return to a situation in which feelings came up and then were ignored. We were to have no say in whether or not we would be kept in what we saw as a punishment for doing what we felt was right. We were to have no say in whether or not we were ready to return to a place which we shouldn’t have been removed from to begin with, and that wouldn’t have been associated with anxiety, frustration, agitation, or any other unsettling feelings if we’d been given time and patients by adults while we tried to figure out the right words to match to the right concepts and get our message out properly. We were powerless, and this was ok, since the overall goal of this whole thing was to get us to ‘comply with adult requests’.
In later years, the location we were to be taken to would be changed from the braille room to the room in which the third-party agency conducted their part of things in the building, and the things that were done once we were removed from the classroom would also be different, but that story can wait, for the moment.
The first version of the behavior plan which contributed to our development as a community concludes by saying, “If behavior escalates to being violent, with physical contact, or attempts at physical contact, parents will immediately be called. Records will be kept by the case manager of the frequency and duration of targeted behavior, along with notes.”
This part does make sense…it’s one of the only ones that does. If only the same kind of sense could have come about and changed the rest of the plan…or prevented it.
Ultimately, this entire plan is nothing more than a confirmation of what we believe to be a complete and utter emotional disconnect between us and all involved in its creation and implementation. The entire thing is disconnected in its actions, and clearly demonstrates a lack of knowledge of the actual causes of our so-called tantrums, but we’ve already said all that. Walking failed to calm us, but again, that has already been said. As we attempt to find technology that will allow us to search through the rest of the things we’ve obtained for the purpose of this search for answers, we can think of only one thing to do so that all the messages we’ve received from the actions based on the quotes above can be reversed. We will create a ‘plan of counteraction,’’ which we will then post here after we find, and post a response to, the rest of the things that were done in the name of changing our behavior.
Hey, behavior plans are as behavior plans do. We just might be able to make it work.