I may be doing this out of order, but it’s what I’ve been battling for weeks. The IEP–individualized education plan. I gotta say, I’m beyond exhausted, and the battle is only just beginning. Let’s just hit the ground running, shall we? What is an IEP? I like this answer:
“IEP stands for Individualized Education Program (alternatively called an “Individualized Education Plan,” “Individual Education Plan,” or some combination thereof). This is a legally binding document that spells out exactly what special education services your child will receive and why. It will include your child’s classification, placement, services such as a one-on-one aide and therapies, academic and behavioral goals, a behavior plan if needed, percentage of time in regular education, and progress reports from teachers and therapists. The IEP is planned at an IEP meeting.
The individualized part of IEP means that the plan has to be tailored specifically to your child’s special needs — not to the needs of the teacher, or the school, or the district. Goals, modifications, accommodations, personnel, placement, all should be selected, enforced and maintained with the particular needs of your child in mind. “We don’t do that,” for example, is not an individualized response. If your school has never had a child like yours (and since your child is an individual, they haven’t), and now they do, and a service is appropriate to his or her needs, then they do do that now.” (online source)
That sounds easy, right? WRONG. Schools don’t like to give out IEPs. Why? Money. Accommodations, modifications, assistance, tailoring curriculum, putting the “individual” in the education plan? That’s costly. So, schools rely on federal and state guidelines to limit access to the IEP. Now, this can be a good thing. Like it or not, there are parents out there with Perfect and Unique Snowflake Syndrome (PUSS). PUSS-afflicted parents bang down the doors of their educators and school boards demanding special testing and accommodations for their beloved Perfect and Unique Snowflakes (PUSes). Why? Because it’s evident that they are gifted, talented, and, above all, being held back by the inadequate educational offerings of the school. They must be, therefore, evaluated immediately and put on an IEP! Pronto!! Of course, they have a point. Funding to Gifted and Talented Programs are being slashed left, right, and center. Class sizes are too large, and teachers are unable to perform their jobs to their utmost. Yes, it’s true, many school districts across the nation are losing almost all of their arts programming, and valid scientific theory is being replaced by creationism in parts of the country as well. Clearly, there are worthy fights on the educational front, but, for the parents out there engaged in competition parenting who worship their ‘Golden Children’, nothing is more important than the rights of their delicate snowflakes–unique, gifted, and entitled. The individual rights of the PUS trump everyone else, and this is one very valid reason why schools and school boards hide behind federal and state guidelines to the point of depriving children with very serious special needs the public education that federal and state law mandate they provide. After all, even those kids are perfect and unique…just like everyone else.
So, what’s the truth about these federal and state guidelines? Oh, they are labyrinthian in nature, and, if your SPED evaluator is anything like mine, then s/he will impress you with what appears to be a great depth and breadth of knowledge concerning these statutes. Looks, however, can be deceiving. Let me acquaint you with Wright’s Law and IDEA–The Individuals with Disabilities Act. They will become your two best friends should you ever have a child with special needs who needs an IEP.
What actually happened yesterday at my second IEP meeting? It goes like this. The SPED evaluator (Special Education evaluator) arrived. She didn’t want to wait for everyone on the IEP team to arrive so she tried to start the meeting early. That’s never a good sign, and it goes against protocol. The school psychologist arrived next. Those two talked as if they were bosom buddies. It was a good observation to make. Pay attention to things like that. The district representative was next on the scene. She’s a speech pathologist, but she’s on special assignment. We’ve had the most one-on-one conversations. The assistant principal made an appearance, and a school counselor spent some time in the meeting, too. One of Grace’s teachers, who has been recording her own observations, came as well. This is what typical IEP attendance looks like. I brought along an advocate who happens to be a friend because I had a feeling I was going to be politely bulldozed into submission.
It’s important to pay attention to the tone of the meeting. Is there concern for your child? Take note of who shows concern and who doesn’t. The goal of this particular IEP meeting was to decide if an IEP evaluation would be done. Essentially, does Grace need an IEP, and, if so, what kind? This is where those federal and state guidelines I talked about come into play. There are all sorts of IEPs. The IEP team wanted to evaluate Grace using Emotional and Behavioral Disturbance criteria (EBD/IEP). Because each IEP has its own set of criteria, the guidelines under the law are different for each depending upon the disability whether it be autism, a traumatic brain injury. a learning disability, or even ADHD. I threw out the idea of an Other Health Impairment IEP (OHI/IEP) because many children with Bipolar Disorder fall into that category. I was immediately rebuked by the SPED evaluator: “Oh no. The state guidelines forbid us from classifying a mental health condition under an OHI because that is only used for ADHD.” Remember what I said about evaluators who seem to have a great depth of knowledge of the federal and state statutes, but, in reality, do not? That’s what happened right there. Either she was lying, or she had misunderstood the statute because her statement was completely false.
I must pause for a moment and explain that this is another instant where it becomes important to know The Lingo except I’m not speaking of medical vocabulary; I’m talking about legalese. The statutes and jurisprudence surrounding IEPs and disabilities in an educational settings may not be reader-friendly. In fact, reading legal documents, statutes, and precedents can be downright hard, but it’s a necessary evil particularly when those with authority in the school district use state and federal guidelines as a means to gatekeep and prevent children from getting the services they need. What’s more, many of these individuals aren’t even reading the laws correctly. They are in violation of IDEA. This is illegal.
A tip: Be a fact checker. If you leave an IEP meeting, and one of the evaluators makes exclusionary statements using federal or state guidelines to back it up, then double check it. As soon as possible.
I was placated and pandered to. My friend did a good job trying to explain to this group of well-meaning people that childhood-onset Bipolar Disorder with schizotypal features was exceedingly rare, but they still looked at us with tremendous…hubris. They were going to have the school nurse review her records. The school psychologist was going to question her. The SPED evaluator was going to evaluate her. They wanted to do a functional behavior analysis of Grace. The school psychologist droned on:
“I’ll observe her in class. We’ll talk about some behaviors, what precedes these behaviors, and what to do about them.”
I took a deep breath.
“You don’t understand. None of you have been paying attention to me. You want to talk about her behaviors and what precedes them? How can I explain a schizotypal child to you? They have flat affect. There is little to no congruity between their inner and outer realities. Do you know what my daughter did a few weeks ago? She was roaming about the house looking placid. She then went into our kitchen and stabbed herself in the hands and wrists all the while looking peaceful. She then sat down five feet away from me, bleeding. I took her to the Behavioral Health ER that night, for the second time in a month. She really didn’t cry. She thinks that there are three men following her everywhere she goes. She thinks that they are in her classroom, watching her. She hides in the school bathroom to get away from them. You observe her anxious looking gaze, her eyes darting about, and think that she’s got a case of nerves. What you’re really seeing is psychosis–paranoia. What if she snapped in class? What if someone walked in who looked like one of the men that she thinks is following her? What do you suppose she would do? I have a safety plan on my fridge. I’ve been told to replace all the cutlery in my house with sporks. Schizotypal Bipolar Disorder is not ADHD! You are not equipped to evaluate her! She won’t talk to you anyway! She’s paranoid!”
They just stared at me. “Can’t you hospitalize her?” And, there it was. Put her away. Institutionalize her. “No, I can’t. Even if I wanted to, who would take her? If a child isn’t ideating at the very moment, then they are released. Grace was released two hours after she stabbed herself.” That’s how naive they are. The best psychiatric minds in my state will be working with Grace, and they all tell me this: “This has to be one of the most complex cases we’ve ever seen.”
Currently, the Lamictal isn’t at a therapeutic dose yet. She is still paranoid. No one knows if she’s got prodromal schizophrenia or not. It’s looking like Schizotypal Bipolar Disorder which is exceedingly rare in children. Like..RARE. She is unable to attend school for more than 3 hours a day. She is currently in a migrainous cycle so she’ll miss the entire week. Her school is in violation of IDEA. She is being deprived of an education and not one person on that IEP team expressed concern or sorrow for that, and that’s the whole point of the IEP–to see to the education of a child.
They are still arguing over whether or not she needs one.
Does this tell you anything about how hard it is to get an IEP? It’s lunacy. Hubris, arrogance, and a total disregard for the welfare of a child. Fortunately, I am not without resources. If the woman at the helm of this evaluation continues to cite federal and state law incorrectly, thus, using it to justify depriving my daughter of an education, I am able to up the ante. The school district will not enjoy that experience. Frankly, nor will I.
What about those parents, however, who have little to no resources? Who don’t speak English? Who don’t have the intellectual capacity to read statutes and jurisprudence? Who don’t even have access to the Internet? Who actually believe the school district is on their side when it comes to the IEP process? What do they do? What do their children do?
No, this process is far from over.