Way back in 1990 on this day, then-President George H.W. Bush signed into law the Individuals with Disabilities Education Act, or IDEA. The law’s provisions stayed the same, but its name was changed to reflect greater understanding and awareness about how to treat people with disabilities with respect. Today, 32 years later, while we continue to increase our awareness and understanding about how to work with children with disabilities, there remains a long way yet to go. I have a 12-year-old child on the autism spectrum. This year, the district agreed with us that the best thing for him is to be is an out-of-district placement in a therapeutic school. Middle school, as he and we experienced it, just didn’t work. While we’re glad to have found a more compatible school setting, I still wonder why schools and society continue to struggle to create truly inclusive environments. Last year, my child started middle school the same way he started each year of elementary school: mainstreamed in the classroom, with an IEP and a one-to-one aide. My child is very bright and verbal, and up through fifth grade he had been managing with those accommodations. I can't say school was ever a joy for him, but he tolerated it. In the larger, more demanding environment of middle school, though, everything broke down. Our child hated school and felt stigmatized by having an aide and being assigned "special" classes such as social skills. It made him feel "different" at a developmental stage when no child wants to feel that way. He was nearly always tired, overwhelmed and disengaged. Refusals and meltdowns become more and more common. When he felt out of control, he did things that hurt others.
When the Environment is the Problem, Consequences Don’t Change BehaviorAs the year wore on, we realized that rewards and consequences were the only tools the school had available—and neither rewards nor consequences worked anymore, either at school or at home. Things had escalated to the point that our kid was in detention a lot, and once he was even placed in handcuffs by the school police officer. At home, he was emotionally shut down, irritable and sad. Each meltdown at school brought with it more “disrespectful” and violent behavior that had to be treated as a disciplinary infraction, creating a vicious cycle in which the threat of punishment escalated his behavior to the point of even more punishment. We started having to pick up our kid midday because he was hiding in cabinets to escape the punishments. Throughout all of this, my husband and I attended many school meetings and fielded many phone calls from concerned administrators. We both work full time, and we felt the constant strain of wondering whether our child would make it through each day. [pullquote position="left"]We were “easy” parents to work with. We acknowledged that our kid’s behavior was causing problems and we supported the school’s efforts to help. We were never confrontational. My mom was a public school teacher, so I was empathetic to the teachers’ plight. They had 25 other kids to deal with at the same time. School staff appeared flummoxed. Their efforts to reason with our kid, “because they’re so smart, we just know they could do better,” kept crashing against the wall of their misunderstood autism. I realized that in a mainstream setting, because the same rules have to apply for all kids, my kid’s teachers would forever be stuck playing behavioral whack-a-mole, mistaking autistic meltdowns and shutdowns for "bad choices." Meanwhile, the root cause of the behavior—a noisy, socially perplexing environment with too many demands—would forever go unaddressed. A handful of school districts are just beginning to build schools that minimize distractions and create successful environments for a much wider range of students. In my child's case, teachers saw only his bright mind, but not his sensory, self-regulatory and social struggles. He actually has higher needs than may first appear, and as it turns out, those are better met in an alternative setting. Fortunately, the decision to refer our kid to a therapeutic day school was mutual, and the district was cooperative about arranging for transportation and tuition payments.
Kids with Disabilities Aren’t Problems to Be Fixed, They’re PeopleWhile touring his new school, which has an excellent autism program, our child spontaneously spread his arms and said, "I am a good person." Tears sprang to my eyes. Kids with disabilities are too often made to feel as if they are a problem to be fixed. Every child deserves to feel worthy and whole just the way they are. During last summer’s long, relaxing days, my kid was finally able to process some of the trauma of the past year. He explained to me that during shutdowns and meltdowns, “the .exe file in my brain suddenly glitches. It doesn't feel good.” I asked him what helps during those times. He replied, “I just need people to stay calm and help me. Punishments don’t work for me. The worst is when people get angry with me.” Hearing this, I teared up as I realized we, his parents, not just his teachers, had made that mistake many times last year. We had gotten angry and impatient with our child because we desperately hadn't wanted mainstreaming to fail. Now we realize that it wasn't failure. It enabled us to face reality and to stop putting impossible expectations on our child and on ourselves.
Fighting Ableism Is Noble, Brave and ExhaustingI ended up taking an extended family leave to care for our child at home over the summer. For the first two weeks of my leave, I had to push myself to take a shower—really, to do anything other than the bare minimum. I sat with my head on the kitchen table a lot and felt nothing. I wasn't depressed so much as cashed out completely. Just zero left, after months of protracted crisis mode and "being strong." My family is White, we live in a suburb with excellent services and we make a good living. The only thing marking us as targets of any type of "ism" is that we have a differently-abled kid. But that alone—the constant, hidden negotiation of a non-accommodating world; strangers being nasty; teachers mistaking autistic distress for "bad choices”; everyday outings being harder—was enough to destroy me in the short term. I used to think the term "microaggression" was overblown. Then, the thousands of side-eyes and tut-tuts and the comments like "he needs to learn” and "maybe this just isn't for you” toppled me. Fighting ableism is noble and brave, but it is also exhausting. As my child becomes an adult, I don't want his energies to be consumed in that fight. He has so much to contribute to life: a strong sense of justice and empathy, deep intellectual passions and unique perspectives. He deserves not just tolerance or "awareness," but true accommodation and inclusion. I hope it won’t be too many more anniversaries of celebrating IDEA’s passage before we achieve that depth of inclusion.
Lisa Sniderman is a Chicago-area social worker, former journalist and mom of two public-school kids.