Imagine for a moment that you are a teacher and it’s the first day of class. Every child is wearing a white baseball-style cap. On the front of each hat is a phrase or two, such as: “has a lisp,” “allergic to peanuts,” “loves to read,” and you see one that says, “emotionally disturbed and oppositional defiant and behavior disorder.” What would you think? Uh-oh! I bet he’s a handful! Oh great, why does he have to be in my class? Am I right?
I recently was reviewing a newly revised IEP for a client, with another advocate (who was my supervisor and a mentor at the time). We were combing over the item to check for items and do a full record review.
“What do you think of the cover page?” she asked.
I looked it over and said, “guess it’s ok.”
“No, it’s not. Look at the bottom. Under ‘other.’ They have a partial list of his diagnoses.” And reminded me that the IEP is based upon needs, not diagnoses. She’s much more experienced than I am, and it was a moment where I felt a voice saying “ah grasshopper, you still have much to learn.” And I do. I think I am good at helping students get what they need to address their needs–it’s these other little things I need to add into the equation.
Why is this important? Well, this child’s diagnoses include: bipolar disorder, mood regulation disorder and emotionally disturbed. So, a casual glance, without knowing this child-that is your first impression of him. Certainly not strengths based, is it? A person with biases and little experience takes one look at that and thinks “this kid is nuts/crazy.” Which is exactly the bias we were up against with that district.
This week, I had my son’s IEP meeting. Of course I was apprehensive. Arrived, sat down, was handed the draft IEP…and sure enough, right there on the front page, under ‘other’ was a partial list of his diagnoses.
The IEP is to be based on the student’s needs. The diagnosis isn’t even that important at this point–presumably some type of diagnosis has already been given, so we know the “why” as to the student’s needs. But this is all about accommodating those needs, not determining why they have them. I think as parents and as advocates, we are so eager to dig into the meat and potatoes of the IEP that we overlook the first page. Quick glance, yep, name and address is correct, let’s move on. That is what we do, right?
But wait, deep breaths, digest it page by page. I’ve said before that I feel that Present Levels and Parent Concerns is the most important part. I want the team analyzing my son based on that, not the cover page.
Some diagnoses carry very negative stereotypes and stigmas. A teacher or therapist may read that partial list, never having met your child, and they’ve already formed an opinion about them. Right or wrong, we all do it–we base our opinions on what information we have. I challenge you to find one teacher that won’t flinch hearing “ODD” and already predetermine that that child is going to be a behavior/discipline problem. Have you ever seen two children with autism or Aspergers or PDD or ADHD or anxiety or…..any other condition…that act the exact same way? No, of course not. I was told in a seminar last year that researchers have now identified over 75 specific, different kinds of dyslexia–so do you really want “dyslexia” on the front page of what information teachers receive about them? No, you want them to help with comprehension or decoding or whatever the issue is, which should be on the inside pages.
In my son’s case, they listed two of his diagnoses, and they are the two that leads to the “whys” as far as his skill deficiencies, but they are also the two most complex ones, and the two that no one has ever heard of. My pediatrician had never even seen a child with his chromosome disorder before him, it’s quite rare. Do I want any teacher or service person trying to decipher what his condition is? No, waste of time, really. I want them to get to know him–his needs, his strengths, his skill deficits and his amazingly charming and warm personality. I don’t want them to read some rare conditions and assume he must be medically complex or fragile (he’s not). I want them to read about what he can and cannot do (yet) and under what conditions, and to strategize about fun and creative ways to motivate him, help him be successful.
Sure, it’s a small thing. But I think it’s important, don’t you? Go take a look at your child’s IEP, and what does their first page say about them? What would first impressions be?
Author’s note: This post was originally written and posted in 2012 but was edited and changed a bit to make it more current.
I have received several emails and comments asking me to clarify the post, so I will try again. Yes, there is a place for diagnoses in the IEP. As I said, it should be in the ER/RR or Present Levels. My point here is that it should not be front and center on the front page, under that section that says other/notes:. That is no different than a kid coming into class and wearing a shirt with a list of his diagnoses on it. We want people to see the child first, the diagnosis second. Get to know the child before assuming who he is based on his labels.