Here in Texas, our kids won’t start school for almost another month, but other states are already gearing up. Back-to-school sales flyers are everywhere; my email is barraged with ads about all the new clothes and shoes my kids supposedly “need”; and my Facebook feed is increasingly populated with articles about education. July 26 marked the 25th anniversary of the ADA, so it is fitting that many of the items in my news feed are about ADA accommodations in schools and the long road we still have in front of us. One such essay, “Why Schools Over-discipline Children with Disabilities” by Katherine Reynolds Lewis, came across my feed just this morning and hit me hard.
I could quote the entire essay, but instead I’ll paraphrase a few statistics here. Citing a recent study by UCLA’s Civil Rights Project, Lewis says that elementary school children with disabilities are suspended at double the rate of children without disabilities. Among secondary school students, the rate remains nearly double. And, apparently, a third of all students with emotional disabilities will be suspended at least once in elementary school. Lewis’s next paragraph brings it home for me: “These discrepancies amount to what some researchers and advocates call “the discipline gap,” and it potentially matters for tens of millions of K-12 students with conditions such as oppositional defiant disorder, attention-deficit hyperactivity disorder, autism, and depression. These are often kids who can’t sit still, who challenge their teachers, or who struggle with social interactions, among other behavioral challenges—all of which can look like deliberate misbehavior or defiance and, in turn, lead to disciplinary action.” In short, this is MY kid.
When my son was in kindergarten (in a magnet school in Tennessee), he held the dubious distinction of being the first child in his entire school to earn in-school suspension that school year. How long did it take, you ask? He was suspended by the end of the first full school week. I don’t even remember why he was suspended, because over the course of the school year, between August 15 and March 5, he was suspended 9 more times. You read that correctly: my then-5-year-old was suspended ten times. The “reasons” sort of run together in my memory. Sometimes it was for shoving other kids. One time (in 2nd grade), it was for throwing rocks at an adult during a field trip. One time he had to spend an afternoon in the principal’s office because he told the other kids that he didn’t believe in the Elf on the Shelf and actually touched the elf. The other kids got upset, so they removed my child. Most often he was suspended, or lost recess (yes, they still do that), or had to go to the principal’s office because he lost control over his body after hitting sensory overload. The toughest time of day for him was just after sitting in the noisy cafeteria. He would get in line and fling his arms about and push on whatever was next to him. (Earplugs helped for a while, but lunch time continues to challenge him.) We soon figured out with the help of an OT that he needed major proprioceptive input throughout the day; because of sensory overload, he was having difficulty figuring out where his body ended and other objects began. So he rolled or pushed or body slammed after lunch, or literally tried to climb the concrete walls. And instead of finding a solution or asking my son what they could do to help, the school decided he was deliberately hurting other kids and punished him.
March 5 of his kindergarten year was a magical day: it was the day we finally had his first IEP meeting. After just a few weeks into the school year, I began sending letters to the school, asking in writing (which you must do) for my son to be tested. The school refused, since we had no diagnoses that required ADA accommodations. They were not even willing to do cognitive testing. (And by the way, if you request testing in writing because your child’s educational outcomes are clearly suffering, the school must comply. It is illegal to not comply, but parents have to be willing to fight. Schools will not readily hand over resources. This was rocky terrain for us because his school work wasn’t suffering. He was reading at an advanced level already, and more then kept up with work. He was, in fact, bored. Making sure that gifted kids are offered appropriate testing measures is another issue entirely.) By October, after several rounds of suspension and other disciplinary actions, my son began to see a pediatric occupational therapist. We went weekly, and he loved it. And the OT confirmed that my son needed serious help with sensory overload. But here’s the thing: Sensory Processing Disorder is not recognized by the DSM as a disability, and the ADA only covers recognized disabilities. So he was getting regular OT help, but his school environment remained the same. At one point the assistant principal said to me quite breezily: “I don’t want to tell you what to do, but we simply can’t offer you accommodations until or unless your son has a recognized diagnosis.” (For those of you looking for a reason for why childhood diagnoses of ADHD, ASD, etc. have skyrocketed, here’s another piece of the story: schools will not accommodate children unless they have a diagnosis. Schools themselves are pushing parents towards diagnosis, because simply trying to figure out what the child needs is apparently not an option.) So over winter break, we saw a neurologist, and my son was given an ADHD diagnosis. And right after break, once presented with a diagnosis, the school was willing to test him. And once they saw his IQ, they were more than happy to change their tune and accommodate him. Isn’t that an interesting coincidence?
I want to be clear here that I am sharing my son’s issues not to out him but to shame the school and the entire educational system that encourages these cycles. He should never have been suspended. And after his IEP was in place, he went a year and a half without serious behavioral issues at school. His kindergarten year could have been so different if his school administration had been willing to believe that 5-year-olds need help, guidance, and compassion more than they need judgment and discipline. And truth be told, he enjoyed both in-school (ISS) and out-of-school suspension (OSS). ISS allowed him to be in a quiet room with just a teacher or aide. He’d chat them up and do his work in a flash. Without all of the noise and chaos of a busy classroom, and without constant transitions during the day, he thrived. And OSS meant he could be in his familiar home sensory environment. So how is suspension encouraging him to change his behavior? It didn’t. It did encourage him, however, to think of himself as the kid who always gets in trouble. What a terrible gift to give to a rising 1st grader.
My son is now in a different school in a different state. I have learned to be anxious before each school year, because I don’t know what battles I will have to fight. Even after 25 years of the ADA, accommodations in schools are inconsistent at best. If you care anything about children and education, you should read the rest of Lewis’s essay. As for me, this year when my son goes back to school, I will enter a Special Education Advocate training program. Whatever battles I have to fight from here on out, I will be armed with the law.