I am in hell—or its equivalent. Specifically, I am in an IEP (Individual Educational Plan) meeting for my 14-year-old daughter, a special-education student in Prince George’s County, Maryland. Sitting across from me is an educator who is describing one option that she says would be a great place for my daughter to attend ninth grade: a program at one of the county’s lower-performing public high schools for adolescents who have emotional disabilities or autism. (My daughter has ADHD, an auditory processing disorder, and some major anxiety issues, but she does not have autism and does not qualify as “emotionally disabled.”) Another option is a school for kids with language-based learning disorders. My daughter’s reading comprehension and vocabulary skills are ranked as “very superior,” according to the county’s own psychological testing; her learning issues center on math.
All this leaves us one more option: a school in Baltimore for college-bound kids with a variety of learning disabilities. That could be a possibility—but today is July 7. School starts in six weeks. Even if all the paperwork gets processed this week—and often this kind of thing takes a month or more, because there are so many special-education kids and so few special-education caseworkers—my husband and I would still be making the momentous choice of where to send our daughter to high school under deadline pressure, without the benefit of visiting the school when its students were actually there. School visits should have happened last spring, except there was a mixup with her paperwork, and these bureaucratic mistakes can take forever to rectify. But playing the blame game at this point just uses up time, which is what we don’t have. So here I sit, stifling my mounting rage with what I hope is a poker face.
Federal laws exist to protect kids like mine: specifically, Section 504 of the Rehabilitation Act of 1973, a 2008 amendment to the Americans with Disabilities Act of 1990 (ADA), and the Individuals with Disabilities Education Act of 2004 (IDEA). All state that children with disabilities have the same right to a “free and appropriate public education” as any other child. Lots of people think the ADA and the IDEA exist to protect youngsters who are blind, or who have cerebral palsy or autism or other cognitive delays—the kind of things most people think of when they see the word “disabled.” And that’s true. But the laws also exist for kids like mine with invisible disabilities, including very bright students whose learning disabilities create huge disparities between their math and their verbal skills. In educational parlance, these are known as “twice-exceptional” students, or—sometimes—GSLN, for Gifted Students with Learning Needs. (The world of public education seems to have more acronyms than NASA.)
A child who simply needs certain accommodations in the classroom is covered under the ADA with what’s known as a 504 Plan. The idea is that with a little help organizing his schoolwork or a few minutes more to finish a test, the child will be able to succeed in the same environment as his peers, the same way a hard-of-hearing student might simply need a hearing aid. The other law, IDEA, gives students with more significant disabilities the right to specialized instruction, as outlined under the IEP. That could mean anything from a pull-out class period devoted to individual tutoring, a designated classroom aide for the whole school day, or assignment to a school dedicated to special education students. Having an IEP can also mean the stigma of being picked up at home by the “short bus,” and many parents will do anything to avoid it.
But stigma hardly compares to the problems faced by twice-exceptional kids in today’s increasingly regimented and test-driven public-school classrooms. Some teachers recognize their differences but lack the training or the time to alter their teaching methods; others just assume that a child who is smart in one area is simply being lazy or obstructionist by not being smart in another. The emotional toll exacted on a child who is told that his repeated failures are his own fault can be high. After three years at an elementary school where she was constantly told that she “just needed to focus,” my daughter collapsed to the floor one night sobbing. She’d spent two hours on homework and still wasn’t finished, but I told her she was done. “I’m not done! I’m not done!” she wailed. “There’s always something else, and I never know what it’s going to be!” One day I found bloody Kleenxes stuffed between the mattress and the wall, which made me suspect she was cutting herself. Maybe she was suicidally depressed. She was 10.
It’s not uncommon for twice-exceptional kids to fall apart in middle school. Up until then, many may have been able to fake success, but the demands of more classes, more homework, and a more challenging social environment can overwhelm them. Maybe the child has been spending hours on what should have been 30 minutes of homework, maybe he has begun to refer to himself as “stupidhead,” maybe he is reduced to tears three nights a week by Algebra 101 or essay assignments—but often all the school sees is a C student who “isn’t living up to his potential.”
At that point, even if parents ask the school to do some testing, they may meet resistance: Testing is expensive and time-consuming, campus psychologists are spread very thin, and schools are under pressure to put fewer kids in special education, in the name of “mainstreaming,” not more. So the parents often end up resorting to private testing, which can run as high as $2,000 and is seldom covered by insurance. Or they may simply stop and wait for their kid to flunk math, at which point the school will be forced to come up with some kind of plan—an approach called “waiting to fail.” In recent years, this approach has been supplanted by a more humane educational tactic called “response to intervention,” which is a fancy way of saying “tackling these problems early with specialized instruction.” But theories don’t always survive the collision with the reality: general-education teachers who are overworked, stressed, and under-trained in the discipline techniques that are most effective with kids whose brains are wired differently. As somebody (sadly, probably not Yogi Berra) once said, “In theory, there’s no difference between theory and practice. In practice, there is.”
And so, the IEP meeting, which is where the overarching purpose of federal law (“to ensure that all children with disabilities have available to them a free appropriate public education … [that provides] services to meet their unique needs”) meets the nitty gritty question: How do we do that for this particular child? In plain English, the IEP is a document that states the child’s specific disability, his current level of academic performance, his academic goals, the progress he has made so far, and a detailed summary of how the school plans to help him going forward. They take place at least once a year, but can be much more frequent, and they must be attended by at least one of the child’s teachers, a school psychologist, or at least somebody who can interpret various test results, somebody from special education, and a school administrator. If things have not been going well, parents may bring lawyers to the meeting, which means attorneys for the school system are, too.
The whole thing is a cross between a legal deposition and a committee meeting, and it follows a rough script: Everybody introduces themselves for the record, teachers give a progress update, and then everyone gets down to the question of what to do next—which, by law, has to start by considering placement in the “least restrictive environment,” otherwise known as the neighborhood school. Since my daughter was diagnosed with ADHD in second grade, I figure I’ve sat in on at least 20 of these little confabs, with up to 15 people in attendance. This is a high number, and any educator seeing it would immediately suspect that I was a high-maintenance “helicopter parent.” All I can say is: guilty as charged. In my own defense, my daughter had the misfortune of being at an elementary school noted for having the highest standardized test scores in the county and an institutional culture that seems to regard kids with learning disabilities as impediments to their goal of keeping those scores high. You could say the school and I had differing agendas.
At any rate, assuming the average teacher’s salary and factoring in travel, meeting preparation, and the cost of hiring substitutes to cover classrooms—union rules in my county say teachers cannot be required to stay after school for meetings, although many do. (And the time of the meeting itself, I figure the county has spent several thousand dollars on IEP meetings for my daughter alone—and that’s excluding travel time and the hourly cost of their attorneys’ time, which I have no way of calculating.) Even if this analysis applies to only one-tenth of the 15,000 kids in special education in Prince George’s County, you can still see how massive amounts of time and money are devoted to producing an incredibly detailed, jargon-filled document that very few people actually study.
Teachers get a copy of the IEP at the start of the school year, but these can be lengthy documents; my daughter’s at times ran 30 pages (although much of this consisted of form questions). By middle school, when one teacher can have more than 100 students a day, he or she could have 15 or 20 IEPs to read. It’s not easy. IEPs are like legal documents in that you have to extract relevant bits of information from here and there, and put them together. Every parent of a special-education child with whom I’ve interacted (and I belong to a listserve that includes parents like me from states up and down the East Coast) has learned the hard way that you can’t depend on IEPs to convey anything. If you want a teacher to know, say, that your autistic child will go ballistic if he sees some rule inconsistently enforced, or that your child’s ADHD medication starts to wear off by 2 p.m., you have to get that information to the teacher yourself. And due to privacy issues, people like lunchroom or recess monitors may not have access to your child’s IEP—even though problems in social skills are frequently part of the learning-disabilities package, and a lot of social interaction takes place at recess and in the lunchroom.
Even the best-intentioned and most heroic general-education teachers are hard pressed to implement even some of the basic provisions—a printout of class notes, for example (lesson plans can change at the last minute), or individualized instruction (in a class with 30 students). The more callous or burnt-out simply ignore them. Getting schools to actually deliver the services promised in an IEP often depends on parents and their skill at monitoring, negotiating, and advocating. If that doesn’t work, they can file an appeal—a complicated, lengthy process—or sue.
What often takes the place of meaningful compliance is meticulous attention to paperwork requirements (Sign this! Here, we have to give you this list of Rehabilitative Services!)—and/or a kind of magical thinking in which simply describing a program becomes the same as actually delivering services. In my meeting, I’m seeing symptoms of the second problem. The documentation clearly shows that my daughter is not on the autism spectrum; what’s more, the reason for this meeting is that everyone in the room has agreed that my daughter’s hard-won progress over the past 18 months means she no longer qualifies as a child with an “emotional disability.” But that special program for kids with autism and emotional disabilities will be a perfect fit, because classes are small! And that school for kids with language-based learning disabilities will work for a student with superior verbal skills, because some of those kids with dyslexia also have ADHD!
After eight years of emails, too many meetings to count and countless homework battles, I found myself rounding a corner yesterday and feeling a flush of anxiety—a hot feeling in my chest, an extra thump of my heart—at the sight of a county school bus. I have to remind myself: This isn’t us anymore. This fall, my daughter started at a private high school for college-track students with a variety of non-standard learning styles, where the motto emblazoned on the front of the buildings is “Because not all great minds think alike.” There’s no relentless standardized testing, classes are small, there’s a rich arts curriculum, teachers are skilled in addressing individual learning needs, and teacher pay is not determined by student test scores. The full retail price of sanity is steep—$32,800 a year—and over the next four years that will make a sizable dent in our retirement funds. But at least we have retirement funds to plunder. Parents with fewer financial resources than ours take out loans or second mortgages, or they homeschool. Or they settle for what they can get.
In a world that made sense, students like my daughter would be seen for what they are: canaries in the coal mine that public education has become. Their struggles highlight the dismal state of teacher training in this country, the urgent need not for more tests but more innovative teaching methods, and the dogged persistence of such educational “theories” that learning disabilities equal low intellect, or that it is possible to discipline a child into learning differently. And in fact, educators do know better: In some pilot programs here and there, there are small seeds of change. Those could take a generation to flower, and for parents like me the wait may seem more like a couple of centuries. Time passes slowly when you’re in an IEP meeting. Childhood doesn’t wait.
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