If your child receives special education services, there is no doubt that you have pondered the effects of labels. Interestingly enough, parents are the first to bestow a label on their children. It seems that one of the rituals of pregnancy is to rummage through baby naming books, check out online directories, and search for the latest trends in an effort to either join or depart from the crowd. Why do we invest so much time, effort, and thought into the name we will give our child? Because that name often signifies our vision of our child, and specifically it becomes an outward sign of the hopes and dreams we hold for him.
This is why it can be so unsettling to have others bestow a label. Sure, we would likely welcome the label "valedictorian," "quarterback," or "volunteer of the year," but when the label has the potential to negatively affect how others view our child, this threatens our vision. When the label makes it hard for us to hold onto our hopes and dreams, conflict arises. It simply is not possible to look at the issue of labels without looking at the hopes and dreams we hold for our children.
An Example: Diplomas
Graduation from high school is a significant rite of passage in our society and for many it is part of the vision we hold for our child. There has been a great deal of controversy in New York recently surrounding high school diplomas. Previously, students could earn a Local Diploma, a Regents Diploma, or an Individualized Education Plan (IEP) Diploma. Both the Local Diploma and Regents Diploma were based on statewide examinations, but standards of performance necessary to achieve the Local Diploma were less stringent. Local Diplomas are currently being phased out. Why is this problematic? Because being able to attain a Regents Diploma is not a realistic option for some students with disabilities, and yet they certainly have employable skills. The IEP Diploma functions mainly as a certificate of attendance and often is not accepted as a high school credential for even the most basic jobs or the military.
OK, so my son DJ is in second grade...why am I thinking about diplomas? Because everything that he does now, especially learning to read, is a fundamental building block toward being able to earn a diploma. Ultimately, a diploma is just a label, one that does not necessarily represent with accuracy a child's achievement. But the label on that diploma is tied to our hopes and dreams, and as such we must worry about it. DJ just had his annual IEP review meeting, which serves not just to plan for the school year, but also to plan for lifelong goals, including diplomas. If DJ is labeled and pigeonholed now, he may never achieve what he is capable of achieving.
Labels Causing Trouble
As is often the case, we seemed to be getting mixed messages from my son's IEP team, and much of this is due to labels. Prior to our annual review meeting, we were told that DJ would likely not be eligible for summer school services this year because he was doing so well. They also felt, however, that he would be a candidate to be exempted from the required Third Grade state assessment testing and instead take alternate assessments. Alternate assessments are basically portfolios of work that represent a student's progress towards achieving a few hand-selected performance indicators loosely tied to the general education curriculum. Alternate assessments are meant for students with the label, "most severe cognitive disabilities." There is obviously an incongruity between a student deemed too high-achieving to attend summer school, and one labeled as severe enough to require alternate assessments. I quickly notified the school that I felt differently about both issues.
I'm not sure what happened, but the summer school issue went away. When that issue was addressed at his meeting, the team promptly responded that DJ was eligible for summer services. He needs them! But if I were to argue this point, I would have to label him as a student who would substantially regress over the summer, since a student is only eligible for summer services if regression is expected. I frankly don't care about whether he will regress, but I do want him to have every opportunity to learn, build skills, and move forward, regardless of label. Labels make things so tricky!
Speaking Our Dreams
The issue regarding the assessments, however, was not so easily worked out. In fact, we are still getting a lot of push back from the school. Make no mistake, I don't think DJ will be successful on the state assessments and I am also not at all confident that he will ever be able to obtain a Regents diploma. That said, we have big dreams for him, that he will live in his own apartment, hold a job, and maybe go to community college.
One of the interesting things about being a parent to a child with an intellectual disability is that it would be much easier to just say to the team, "You know what, we agree, he probably can't do it." Why? Because they would nod sympathetically, try to put together the best plan to make the most of the time he spends in school, and there would be no "push back." We would all be on the same page, following the usual path of students with his label.
What is much harder for a parent in our position is to be the natural cheerleader every parent wants to be for his or her children. Why? Because we absolutely fear speaking our dreams and having those around us look at us like we are crazy, that we just don't understand, that we just haven't learned to cope. We know if we speak our dreams we are going to be met with resistance. And we are so afraid that indeed we may be a bit off our rocker in having such dreams that we fear the confrontation, the being brought back down to earth, the lack of support in those who we hope would be cheering with us on the sidelines.
Although we have moved into a very politically correct era of dealing with persons with disabilities, underlying assumptions remain, and it is those assumptions that I feel force our hand into not agreeing with alternate assessments. The New York State Education Department has indicated that it believes MOST students with disabilities should be able to receive Regents Diplomas, and that alternate assessments should be the exception, not the rule. If they believe it, why shouldn't I?
Maybe DJ doesn't need an alternate assessment--work gathered by his teacher as opposed to an objective assessment. Maybe what he REALLY needs is to escape his labels through alternate teaching methods that unlock the doors of reading for him.
The Problem with Labels
Labels continue to be an issue within special education, and it is unfortunate that we need to label at all. DJ has a label of mild mental retardation. My other son isn't labeled--he just is--and he certainly has his own strengths and weaknesses when it comes to learning. Every child is a unique individual with special charms, strengths, and challenges. There will never be a way to group kids under labels that will represent their wonderful individuality.
Labels also have the potential to limit our creative potential in working with kids. For many, the label sets up an underlying assumption or mind-set that can become a brick wall to achievement.
Here's an example of the brick wall. The special education chairperson in our district has previously been heard saying: "All kids who are on alternate assessments are in self-contained classrooms." That statement is false by the way, even within our district, and represents a mind-set. Her supervisor quickly corrected her--remember we are in a politically correct age--but the fact that she said it had already revealed her underlying assumptions, that kids who are taking alternate assessments have significant disabilities, can't be mainstreamed, and will not graduate with a regular high school diploma. I have asked and been told that students who take alternate assessments can later be moved back into the mandated statewide assessments, but I can't be given any examples of success in doing so. I believe that if DJ will ever be successful in taking the state assessments he is going to need as much exposure and practice within the testing environment as possible, as well as effective approaches to teaching him to read.
The teachers working with DJ seem to be thinking of him in the following way: he's a special ed student who needs significant support in the general education classroom and he is nowhere near grade level. Since he is on a course to an IEP diploma anyways, alternate assessments are OK. But DJ has surpassed their predictions and labels before. I reminded them that they told me at the kindergarten screening that there was no way DJ would manage the typical kindergarten classroom. I want him to be challenged. Who knows what he can do until we let him try?
The solution the school has developed in regards to DJ and assessments speaks volumes to me regarding underlying assumptions and labels. Because I didn't agree with alternate assessments, DJ will take the mandated State Assessments AND the team approved ADDITIONAL special education services for him next year! In a year of budget cuts, we actually came out with more services than we went in with, and it is not as if they haven't been generous to DJ in services in the past.
While I am of course happy with the additional services, they weren't on the table until I refused to allow alternate assessments, thwarting labels and assumptions. It does leave one to wonder if there may have been an attitude of not setting the bar high enough and doing just enough to get him through on the track that labels had predetermined in their minds.
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