*** This is the first in a group of articles we've created in the process of reading through our own special education records. This group of articles has been created in an effort to help our processing of the information found within those documents and is not intended to be a personal attack or a dishonest representation of what was written in said documents. Note that quotation marks were used to indicate places where a document, in this case, the IEP, was quoted directly. ***
Over the years, we have explored many ways of putting our past together, from regressive therapies that encouraged re-experiencing of traumas as though they were happening once again, to self-created (should we say selves-created?) audio loops intended to stimulate the recall of the early years of this life in their entirety. These various things have had wide ranges of success, and have given some of us a reason for being, but until now, we had to live with the reality that none of the events we were recalling from using any of them could be verified as having happened. All we had to go on were our own guesses, out-of-place feelings, and bits and pieces of memories that we could never fully find it in ourselves to trust as being recollections of events that had happened in the outside world in the course of the past 18 years. Those of us who are more scientifically minded kept to ourselves when others within the community were going down these beginning routs, knowing that our time to seek verification of the things being reported to us by them would come eventually. We stayed that way for the next 5 years, in the shadows, quietly making plans as the situations of the outside world continued to encroach upon everything we held dear. By the time we were 18 years of age in a physical sense, the reality that our progress was coming to a halt was one we had lived with for some time. While insiders who were completely comfortable with choosing their feelings about things that were happening on the outside attended school and dealt with the blatant rejection of our experiences of multiplicity by others of that place, the rest of us who had not personally experienced past trauma, or who wanted answers in writing as to what had happened to them, began a plan to obtain all of the records that we could find about our early life. We knew that, in the process of finding this information, there would more than likely be uproar on the inside, but we had all reached an agreement by the time the school year had come to an end and summer break had begun: if we were to make further progress in our healing process, we had to seek confirmation about what we felt had gone on during our elementary school years, as well as anything else we could get our hands on.
We found more than we were hoping for in May of 2018. When the woman behind the desk handed our grandmother a heavy box containing all of our special education records from 2003 to the present, anxiety crashed over us. We were closer to getting answers than we’d ever been before, and some of us were hopeful. Maybe the papers would indicate that they knew nothing of our anxiety, and thus would have had no way of doing anything differently. Maybe it wasn’t even a plan at all, just something that the adults there had come up with and never put into writing. Maybe, some of the youngest of us mused, we were all dreaming, and the memories of being taken from our classroom had all been created by our minds as we slept.
Those hopes were short-lived. after three or so days of poring over the papers we’d received, with our grandmother’s help to read them, we found the behavior plan that was the source of so much of our splitting in this life, along with the version of our IEP that went with it. When we read the IEP, our first impressions were good. As with all other papers relating to us that had been written by others of the outside world, we were referred to by the name “Maria,” but that didn’t bother us. The IEP talked about our progress in learning to use assistive technology, and, in its beginning pages, referred to us as “an inquisitive and precocious third grade student,” who was “energetic and unafraid to try new things.”
This came as quite a shock to us, since all we can currently remember is fear surrounding new experiences. We were delighted, though, because this was a far cry from what we had expected to be written about us by those who were involved in our multiple removals from class. They went on to note our interest in music and our love of movement-based activities, and then went on to describe how our blindness impacted our progress in a classroom setting: we were unable to get around the building without help, read print, or pick up on visual clues from others, and needed braille and mobility instruction so that we could keep up with the rest of our peers. We began to see red flags as soon as no further mention of our inability to gather visual clues from other people was made, even while noticing that the other effects of our blindness were addressed in clear detail. After all, visual actions, like facial expressions and gestures, are one of the main ways that human beings communicate with one another, and the fact that this input was something we were lacking meant that, in theory, we were more likely to have social difficulties of all kinds as early as that year. When we saw how little attention this lack of input was given in our third grade IEP, we began to wonder what else was in store, and prepared ourselves, the best we could, for interventions that did not take it into account.
After detailing how our progress was looking as far as our classwork went, including mobility and braille instruction, and noting, in the process, that we did not know our way around the school’s playground, the IEP discussed our behavior. We were reported to have been described as “occasionally being a demanding child,” and it was further stated that we (or ‘she’ as it was written in the IEP) would “Periodically insist on having our wants and needs met immediately without regard to the situation at hand.”
It was stated that, when we were told to wait, we could “resort to tantrums which, at times, could be very difficult to extinguish.”
Why is it that we don’t remember any of this? Why is it that the only so-called “tantrums” (In reality, meltdowns) that we remember having were in response to finally having had enough of what we felt was deliberate ignoring of our thoughts, feelings and opinions on things relating to us, and losing all ability to wait any longer or contain what we were feeling? Tantrums are goal driven, but was anyone paying attention to the fact that the behavior they saw as just that didn’t stop when we got whatever it was we were thought to have been wanting or needing? Did anyone notice that after a point, we stopped caring about whatever had set us off in the first place? That doesn’t sound like a tantrum to us, it sounds like behavior from a child who isn’t being communicated clearly with and who thinks everyone doesn’t hear them unless they fall on the floor screaming. It sounds like the behavior of a child who feels powerless, and like they have no way of changing the situation, let alone finding comfort or reassurance that it will change without their having to do anything. Did we talk about how visual signals are the main way through which human beings communicate? Hmm, maybe giving us auditory signals and verbal feedback about what was happening during these “wait times” would have prevented a lot of our feelings of not being heard, and maybe all that so-called “tantruming” was because we couldn’t have done anything else, thanks to not having learned any other things we felt safe enough to use in a school setting that was basically telling us that our behavior, a part of our world and our experience, was rejected because it was wrong by its nature!
Giving us verbal feedback, for the exact same reasons we’ve just outlined, was what the IEP recommended, though, in our eyes, it was not given nearly enough, and was further disabled from being of any use to us by the fact that it was not given in the situations where we needed it most, such as times in which we were sitting in silence, waiting for, you guessed it, someone to say something. Some of these times centered around school work, as Jenifer vividly describes in this article. Instead of seeing and correcting the issue described there, the adults who worked with us would remove us from the task completely when faced with our frustration and anxiety, both feelings that had been mentioned in the IEP, and were directly related to the fact that, without some kind of audio input from them, we could not read their emotional state, and thus could not determine how to proceed in the process of giving them feedback, such as “I’m not sure of the answer,” or “I’m stuck,” about the task in question. Those removals came in the form of so-called “walking breaks” from the classroom, in which we would be escorted by an adult, often reluctantly, from what we were doing, so that we could walk down to a predetermined point in the hallway and then back to the classroom we’d started from. Of course, that didn’t help relieve any of the things we were experiencing. It was something we did because people in power said, “Let’s go for a walk,” in such a way that we felt we would get in trouble if we did not comply. In our eyes, it became another way for those people to ignore what we were trying to communicate to them, and the lack of any mention within the IEP of whether or not we were willing to take those breaks does not do anything to change our minds on that matter. All that was ever stated in the IEP about these removals from the classroom, which we grew to see as bold-faced ignorings of our communication, as well as out and out expressions of pure laziness and disregard for the meeting of basic emotional needs on the part of everyone involved in acting upon the behavior plan which mandated that they happen at all, was that we required them frequently.
There’s a lot more we could say on how much of a disconnect there was, even in paperwork like this, between the purported issue and the implemented solution, but that’s another topic altogether. As it is, the fact that we “experienced frequent anger and anxiety,” according to the same document which then failed to state our point of view on the implemented solution for just that experience, says a lot about the various systems that allow such disregard and lack of insight into behavior and its true causes to continue. Walking breaks may help one child, but they will not help all children, and this was the reality that was not taken into account in our case.
The final comment made about our behavior in the IEP itself was that we needed full-time behavioral support. After this was stated, the summer program we were involved in was mentioned, as well as the fact that we were receiving one-on-one counselling and going to biweekly group meetings. This sounds great from the outside, but the reality was that, when the group meetings were happening, we were that kid who needed adult help constantly to be involved in them. We were that kid who didn’t say much, mostly because, as with everything else, many of the activities they were doing were highly visual. We did not learn any “coping skills,” which, according to the adults who ran the group, was what the meetings were mainly focused on building, alongside social skills. Not only did we fail to obtain any useful knowledge in either of these areas from those meetings, but we also began to resent whatever power had suddenly required us to attend them in the first place. At times, when adults who did not work with us regularly were unsure of where we were supposed to go for lunch on days when the groups would be held, this resentment would lead us to knowingly misdirect them, and we would tell them we were supposed to go to the lunch room instead of the location of the meeting. There may have been activities we enjoyed during many of those group days, as they were known by us, but, as with most other things involved in this area of our life, the insiders who participated in them were born specifically for that purpose and did not share ownership of the memories they obtained as a result with the others here.
The same thing could safely be said about the summer program. Though we frequently came home smiling, not all of us were involved in that set of activities and situations either, and would outright resist participating in some of the goings on there because of the anxiety that doing so had brought up for us in past attempts. The idea of deep breathing, for example, especially in front of people, frightened us to no end, and it was because of this fear that we refused to participate in a bubble blowing activity that was being done as a way to teach that skill. Again, the group setting allowed our needs to slip from sight, and even with one consistent adult working with us, there were still some activities that we could not participate in because they were not accessible from a blindness standpoint. Was the summer program any better than the groups we participated in at school, then, given all of these issues? Yes, it was by far. We went on more outdoors adventures in that program than we ever would have gotten to be involved in otherwise, and found moments of peace in the process. But all of that doesn’t change the fact that, as far as its goal of improving our social skills went, it failed and then some, so that by the time we stopped going, we were less interested in our peers than we had ever been before.
All that being said, there were some wonderful people in both the group meetings and the summer program, one of whom happened to be our therapist at the time. The group of insiders that handled experiences with him was much smaller, and as of this writing, not all of them have presented themselves as individuals. From what they’ve shared with the rest of us, though, we can gather that our time with him was the best time we had with any adult in that school aside from our mobility instructor. When we brought up the subject of meditation during a session, not only did he say it was ok to talk about it, but he openly invited us to participate in breath awareness under his guidance, twice, once in elementary school when we had first begun conversation about the subject, and once in middle school, when we brought it up again. When we were discussing a song in the context of feeling homesick, he pulled it up on the computer that was in the room and let it play, the whole way through, not even reaching for the mouse to stop it when we began singing along. Another time, when we had brought up a memory of what we were sure was an event from a past life, he not only accepted it as though it were valid, but offered further input on it, just as he would have done with a memory from this life. It would be these experiences which would provide us with the hope we would need to survive the emotional neglect that the behavior program was only contributing to, and even though none of our sessions with this particular therapist addressed our behavior in the slightest, they were of great help because of that hope.
Sadly, or perhaps thankfully, what we learned in therapy never made it into the situations in which the behavior program was present. This was mainly because none of us felt safe to express anything else besides anger and stubbornness, let alone show any interest in focusing on our breathing, in those situations. Remember that to us, our actions were a part of our experience, and that our experience was, at that time, who we were. We were not safe, our thinking ran, not when others were trying to stamp out a part of who we were, so why should we think about, let alone practice, breath awareness in those situations? It was a part of our experience too, and if efforts can be made to stamp out one part of our world, what’s to stop more efforts from being made to do exactly that to another? What, we wondered, as the illusions of unity shuttered under the strain of the behavior program, was going to be the point at which our actions were seen for the communication that they were?
But none of these ponderings ever made it to the English language, not while the body in which we lived was as young as it was. As the weeks went on and the details of the behavior program became engrained into our memory through their repeated invasions of our life, these questions, like many other aspects of this complicated story, slipped from our collective mind. While our parents were busy worrying about our social skills and wanting us to learn the layout of the playground, we were busy trying not to lose all hope and to build a mental escape that was vivid enough to take us away from the effects of what we still believe to be a pure refusal, on the part of those who were involved in our so-called “positive behavioral support” program, to hear us as we came, or to see our actions as the communication that they were. The reasons why we believe that refusal, and not simple lack of information, was clearly demonstrated by the actions of these people, will be detailed in our next post. For the moment, we’d like to close out this one with our final thoughts on our third grade IEP.
We cannot disregard the fact that, in the IEP itself, there were many positive comments about us. We cannot disregard the fact that we were making what seemed to be good progress in many areas of our school life in that time. We cannot disregard the fact that the adults we were interacting with in that year of our life did seem to have many good impressions of us. These things are wonderful, and we’re grateful they were written. However, none of those positive comments or impressions can make up for the language used to describe our meltdowns, the failing of proper accessibility measures to be implemented during our time in the biweekly meetings, or the utter disregard for the fact that behavior is communication, as shown by the attempts to extinguish it which are discussed by various insiders of CommunityBelonging here, here, and here. What we’ve read in this IEP isn’t enough for us to make any conclusions about what the intention behind the section on our behavior was, but we can, and will, state the conclusions we made about the world as a result of that section and the behavior plan that went along with it, in our next article here. It’s the best thing we can think to do in the wake of the fact that this kind of focus on changing behavior, alongside an ignoring of the reality that the mind and inner experiences of a person often lead to the presenting/visible problem in the first place, are so wide-spread that they are mostly accepted as the standard way of treating other living beings. This, to us, is just as unacceptable as the behavior plan of our early school years has tried to teach us that our communication was and is, and it is this aspect of rejection, along with every other one we’ve experienced, that we will speak out against until the day we leave this world for the last time.
Thank you for reading.